Well here I am two years from posting on my blog. Why you ask? Because life happens.
I know it happens to everyone, but I just let it get all up in my joy. My bad.
Lets see if I can write a Readers Digest version.
Three family members have passed. Two uncles and an aunt. I know that sounds like a great title for a movie or a book. Two uncles and an aunt. LOL. None from cancer, one uncle from diabetes, the other from old age. The aunt from diabetes complications also. All three lived long and happy lives, so even though it is sad they are all in a better place. One uncle died in November of 2012 right after Thanksgiving and the other two died this past summer two weeks apart. So summer 2014 was the summer of funerals and such. The two that passed this summer were brother and sister, so I have two aunts left from my mothers side and then that entire generation will be gone. That is pretty sad.
Also earlier this year my daughter in law passed away, she had brain cancer and had been diagnosed in November of 2013. She passed quietly on February 17th in her home with my son by her side two days after they had renewed their wedding vows.
I am working through all of that still while also working on my own journey. As I sit here my mind goes blank, but when I am alone in the dark at night my mind swims with things I want to share.
My job sucks now-we got a new principal who had the nerve to tell me after her being there nine months and me being there six years "I just don't think you are a good fit for this school." WHAT! This was at the end of last year, so of course I asked her if I had a job for this year. She said well of course you do.
So I go to work every day and just do what I need to do. The joy has gone out of my job. Yes, I love my students, but I hate (and I don't use that word often) being there. I don't even know if that makes any sense. I spent months crying everyday on the way to work, but have finally decided she is not worth it.
People say, well just find a new job. REALLY, you think it is that easy. Have you seen the job market, did I forget to mention I barely have enough energy to get through this job. The stress has taken all the extra energy I have, so I now have to muster up and work through before I do anything.
Also, my diabetes meds stopped working so I had to get those changed. Found out I was allergic to one and I puffed up like a balloon. I had to find a new endocrinologist and he (so far) is really good. Put me on a new med that seems to be working better, although it has only been two weeks, so we will see. Also did massive amounts of blood work and found out I have no estrogen in my body and my vitamin D is at 15. Both these could be a reason I feel like crap most of the time. So we will now have to work on them. I hope so, because I am just tired of being tired. I mean the really really tired, where you just want to sit and do nothing at all.
So I ramble, so many things. My oncologist has left the clinic I go to so now I have to adjust again to a new oncologist. I want to find a new place to go where I am not a number and am treated like a person. The clinic called to make my next appointment and told me they will only be taking appointments Monday thru Thursday 8 to noon. REALLY. They happen to catch me on a supper bad day, and after a couple of failed attempts to schedule an appointment on one of my days off from work I told the person on the phone "I am so sorry my cancer is inconvenient and does not work around your small caring window." Then I hung up. So I don't have an appointment, but oh well.
I am beginning to think this is a little larger than Reader Digest, but it is what it is.
I need to start writing here more because it does make me feel better. My own little place to vent and just let my hair down. As far as my CML you ask, well it is doing well still on 50mg of Sprycel a day. Now lets see what happens when my prescription runs out and I still have not found a new oncologist. LOL. I know I need to find one, but I am being a rebel right now and not looking for a while. I know that is not the right step, but it is mine and gives me a tiny bit of control.
Keeping my glass half full as always. Till next time keep smiling, I am. :)
This is my journey through and with Leukemia-CML. I am CML, Controlling My Life, it is not controlling me.
Sunday, October 19, 2014
Saturday, July 23, 2011
Numbers and such
Well, I have been switched to Sprycel because my Lipase numbers were too high, and now my numbers are too high on Sprycel.
I am not happy about this. I get an upset stomach just thinking about it, or after I eat. Tired and can sleep for at least 10 to 12 hours a day if I let myself.
I don't really get hungry, but like ice cream and fruit smoothies that I make myself. I make them out of milk and fruit, or orange juice and fruit (mango's are great in these.) or believe it or not I use Ocean Spray diet cranberry juice or any other kind and fruit, mango's great here also. Don't put mango's in the milk smoothies, not that it is bad, they just don't taste as good. I also add egg whites, don't make a face until you try it. You can not taste the egg whites and it gives you protein, which you need to keep your blood sugar numbers from going up to fast from the fruit,. See I told you it was about numbers.
Anyway, that is what is going on right now. Except for the lump I feel under my left arm which my onc. says could be nothing. Yea, right. Can't feel anything when you feel on the outside but can feel it on the inside. Kind of like when you put a small ball under your arm and you can feel it inside.
Well off to do some laundry, yea, then off to a nap I am sure.
It is the sweating that will get to me and make me tired,. Yes, even inside my house with the air conditioning on and the ceiling fans and other fans, I sweat when I do ANYTHING. It is very upsetting, but like I always say it beats the alternative. So the glass is still half full, even if some of what fills it is sweat. :)
I am not happy about this. I get an upset stomach just thinking about it, or after I eat. Tired and can sleep for at least 10 to 12 hours a day if I let myself.
I don't really get hungry, but like ice cream and fruit smoothies that I make myself. I make them out of milk and fruit, or orange juice and fruit (mango's are great in these.) or believe it or not I use Ocean Spray diet cranberry juice or any other kind and fruit, mango's great here also. Don't put mango's in the milk smoothies, not that it is bad, they just don't taste as good. I also add egg whites, don't make a face until you try it. You can not taste the egg whites and it gives you protein, which you need to keep your blood sugar numbers from going up to fast from the fruit,. See I told you it was about numbers.
Anyway, that is what is going on right now. Except for the lump I feel under my left arm which my onc. says could be nothing. Yea, right. Can't feel anything when you feel on the outside but can feel it on the inside. Kind of like when you put a small ball under your arm and you can feel it inside.
Well off to do some laundry, yea, then off to a nap I am sure.
It is the sweating that will get to me and make me tired,. Yes, even inside my house with the air conditioning on and the ceiling fans and other fans, I sweat when I do ANYTHING. It is very upsetting, but like I always say it beats the alternative. So the glass is still half full, even if some of what fills it is sweat. :)
Wednesday, July 20, 2011
Tuesday, July 12, 2011
Money, The Root of everything CML - and then some
Ok, I am just going to type and get it all out of my system. Kind of like yelling, screaming and crying all at the same time.
I am on Sprycel, and because of my crappy insurance I have to get it from their mail order pharmacy. They don't pay for all of it (of course not) so I had to look around and try and find a supplement company that would assist me.. I don't even make 20thousand a year and with my other meds. I need all the help I can get. Any way I digress.
Before they will send me my prescription every month I need to go through a 20-30 minute question and answer session with them. Name, address, DOB, zip code, last of your SS number, phone number, e-mail address, insurance number, doctors name, drug name, amount, strength of dose, what day do you want it delivered and the list goes on. This is even after my oncologist has given them a prescription for multiple months.
So after this great conversation it is set up for delivery. Then today they call and say that the company that is suppose to assist me with my payments has rejected the prescription. I ask why, they say we don't know. I ask "Well did you ask them why?" The person I am talking to says "it is MY responsibility to ask them why". Then I am told there is no problem with my account with them or with the assistant company I am approved for assistance until June of next year. But for some reason, there is a problem. I ask again, "Did you ask them what was the reason it was denied? "No, I didn't, so how are you going to pay for this", they ask. I ask if they are going to send my prescription while they are waiting to get this all straightened out. (It should be here tomorrow). We will bill you. By now I am upset and hot and tired. I tell them I can not afford to pay for my meds. and even if they bill me I can't pay it, please get with my prescription assistance program and find out what is the problem, because you have told me every thing is correct with both you and them, All the t's are crossed and the i's doted.
I am passed upset by this time because the tell me they are not going to ship my medication until they get this straightened out. Well that prompted me to tell them that they would rather keep making this go round and round till the CML kills me, because they then they don't have to pay for anything. The person on the phone was not happy with that statement, but I wasn't really very happy at that point either. We'll call you back the person tells me. I am not holding my breath.
I call the supplemental company and they call the drug company, now we are on a three way call and the finger pointing goes on and on,
Is my prescription on the way to me you ask. No, is the answer. After an hour and a half on the phone, everyone who could "take care of this" for me has already left for the day. But, "we'll get on it first thing in the morning." Is it any wonder I want to eat a half gallon of ice cream. If I had it I would. LOL.
Since when does money matter more than someones health? That is really a rhetorical question, because unfortunately people are so much more interested in money, money, money rather than their fellow man, or in this case, woman. No wonder our country is in such bad shape right now. I wonder how these same people I talked to today would feel if it were their mother, sister, wife, daughter, aunt, (and so on) having this much trouble getting the medication that is keeping them alive.
Ok, I have ranted enough for now. Thanks for reading.
I am on Sprycel, and because of my crappy insurance I have to get it from their mail order pharmacy. They don't pay for all of it (of course not) so I had to look around and try and find a supplement company that would assist me.. I don't even make 20thousand a year and with my other meds. I need all the help I can get. Any way I digress.
Before they will send me my prescription every month I need to go through a 20-30 minute question and answer session with them. Name, address, DOB, zip code, last of your SS number, phone number, e-mail address, insurance number, doctors name, drug name, amount, strength of dose, what day do you want it delivered and the list goes on. This is even after my oncologist has given them a prescription for multiple months.
So after this great conversation it is set up for delivery. Then today they call and say that the company that is suppose to assist me with my payments has rejected the prescription. I ask why, they say we don't know. I ask "Well did you ask them why?" The person I am talking to says "it is MY responsibility to ask them why". Then I am told there is no problem with my account with them or with the assistant company I am approved for assistance until June of next year. But for some reason, there is a problem. I ask again, "Did you ask them what was the reason it was denied? "No, I didn't, so how are you going to pay for this", they ask. I ask if they are going to send my prescription while they are waiting to get this all straightened out. (It should be here tomorrow). We will bill you. By now I am upset and hot and tired. I tell them I can not afford to pay for my meds. and even if they bill me I can't pay it, please get with my prescription assistance program and find out what is the problem, because you have told me every thing is correct with both you and them, All the t's are crossed and the i's doted.
I am passed upset by this time because the tell me they are not going to ship my medication until they get this straightened out. Well that prompted me to tell them that they would rather keep making this go round and round till the CML kills me, because they then they don't have to pay for anything. The person on the phone was not happy with that statement, but I wasn't really very happy at that point either. We'll call you back the person tells me. I am not holding my breath.
I call the supplemental company and they call the drug company, now we are on a three way call and the finger pointing goes on and on,
Is my prescription on the way to me you ask. No, is the answer. After an hour and a half on the phone, everyone who could "take care of this" for me has already left for the day. But, "we'll get on it first thing in the morning." Is it any wonder I want to eat a half gallon of ice cream. If I had it I would. LOL.
Since when does money matter more than someones health? That is really a rhetorical question, because unfortunately people are so much more interested in money, money, money rather than their fellow man, or in this case, woman. No wonder our country is in such bad shape right now. I wonder how these same people I talked to today would feel if it were their mother, sister, wife, daughter, aunt, (and so on) having this much trouble getting the medication that is keeping them alive.
Ok, I have ranted enough for now. Thanks for reading.
Friday, July 8, 2011
Pain Pain Go Away
OK, been having work done at the dentist over the past two weeks. One tooth pulled and a root canal on another one. Stitches are still in till the 21st. You would think the pain would be gone. Its been a week and a half after all, but no the pain is still there. Is this because of the CML or just because it is what it is?
It is hard to tell.
Went to have blood work done today, my doctor is out of town so just had the weekly blood taken. Then it was lunch with a friend and a little window shopping therapy. LOL. Don't have any spare money to just go out and shop, but it is fun to be out with a great friend for a day.
Very hot outside, so had to be careful about being outside too long. I got overheated anyway. Came home took a cool shower and now am just sitting here trying to relax without taking anything for my headache from the sun and heat or for the pain in my mouth from the dentist work. Something tells me I will wind up giving in and taking something.
My chemo makes me tired and so I sleep a lot, because it is summer I can, but once school starts then it is up early and off to work with the great kids. I teach technology at an elementary school and love my job. I am hoping that my chemo will not interfere with that. I was on Nalotnib and became adjusted to the side effects, but my lipase numbers were not pretty and so after a year of trying with no success to adjust it I am now on Sprycel. Doc has started me at 50mg and will increase it up to 100 mg once he thinks I am ready. Kind of scarey, but what is the choice.
Oh, I think the mouth pain is winning out and I am going to take something for it.
If there are more CML patients out there I would love to hear from you. I know there are a lot of us, but can't find any here in my hometown to either hang with or just talk with. Off to take a couple of extra strength Tylenol.
It is hard to tell.
Went to have blood work done today, my doctor is out of town so just had the weekly blood taken. Then it was lunch with a friend and a little window shopping therapy. LOL. Don't have any spare money to just go out and shop, but it is fun to be out with a great friend for a day.
Very hot outside, so had to be careful about being outside too long. I got overheated anyway. Came home took a cool shower and now am just sitting here trying to relax without taking anything for my headache from the sun and heat or for the pain in my mouth from the dentist work. Something tells me I will wind up giving in and taking something.
My chemo makes me tired and so I sleep a lot, because it is summer I can, but once school starts then it is up early and off to work with the great kids. I teach technology at an elementary school and love my job. I am hoping that my chemo will not interfere with that. I was on Nalotnib and became adjusted to the side effects, but my lipase numbers were not pretty and so after a year of trying with no success to adjust it I am now on Sprycel. Doc has started me at 50mg and will increase it up to 100 mg once he thinks I am ready. Kind of scarey, but what is the choice.
Oh, I think the mouth pain is winning out and I am going to take something for it.
If there are more CML patients out there I would love to hear from you. I know there are a lot of us, but can't find any here in my hometown to either hang with or just talk with. Off to take a couple of extra strength Tylenol.
Thursday, July 7, 2011
New Chemo - New Blog
Well here I am starting this blog about my CML journey. It is late at night so this is going to be short. I just want to try and connect with other people who have CML and hear what they have to say and share how I feel. Friends are great and needed, but some time they don't really understand what I am going through and it takes so long to try explain. "But you look great" or "You don't look sick" or other phrases. I just smile and say thanks and then try to explain that CML really doesn't have anything to do with looks. What is going on inside me and how I feel inside is CML.
But I ramble. Going to bed I will work on this later. Just started Sprycel last week and am still getting use to it. Was on Nalotnib, but that is a story for another day.
But I ramble. Going to bed I will work on this later. Just started Sprycel last week and am still getting use to it. Was on Nalotnib, but that is a story for another day.
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