It is exhausting living in gray…I would love, once, to go to a doctors appointment and come away feeling like there was a game plan with a finish line in place…
Unfortunately that does not happen…I was supposed to get chemotherapy #8 today…it has been postponed until Monday because my liver enzymes are again too high…
This is a disappointment because I work hard to try and be able to still work while getting treatment and moving chemo to Monday means that I will be missing an ENTIRE week of work…which is essentially two weeks of pay, I just got paid today and will not get paid again for a month…it is overwhelming…when you get sick no one pays you…it isn’t your new job…everyone may say to you “Your job is to take care of yourself and get better” taking care of yourself doesn’t not come with a paycheck…and my car loan company or mom’s mortgage holders don’t accept payment in the form of doctors notes…mom tells me not to worry about it, she tells me not to feel bad that I can’t work…but it is hard not to feel bad…I feel so helpless…
The last chemo laid me up for a week, in bed too exhausted to do anything more than go to the bathroom…the doctor said that I should expect the chemo I get on Monday to effect me the same way…he said that I have had HIGH doses of chemo for a long period of time and that it is expected that the exhaustion will just get worse…so the tiredness I experienced last time was not unexpected and he is not too worried about that…
I will be getting another PET scan on October the 23rd and see the doctor to discuss the results on the 27th…if there is still activity he will be referring me to the University of Indiana…Dr. Robinson…I THINK he is a hematologist oncologist (specialist in cancers of the blood)…if I am referred to him one of two things could happen…
#1. He could recommend just monitoring the activity and see if it grows/how quickly it grows ect…
#2. He could after some testing…recommend a bone marrow transplant…I’m a little freaked out by this news…Dr. M said that I may have to have another bone marrow biopsy ect…for Dr. R to determine the right course of action…Dr. M also said that while that was getting figured out I could receive more chemo than just the one coming up on Monday…I’m scared to google bone marrow transplant because I think I would be even more freaked out…maybe later tonight when I have more courage I will see what a transplant entails…
Of course nothing is certain, these are all just possibilities if there is still activity present after the next PET scan…but it is much better for me to be emotionally prepared for what COULD happen…then IF it does happen I won’t fall apart…
What little hair I have grown back has been sensitive this week, and just today I was able to easily pull it out…so I guess tonight I might have mom go ahead and shave it again…
Tomorrow afternoon I will be getting another blood transfusion because my numbers are still low…I just can’t get to normal…
I’ve been a bit tired this week, but thought it was more emotional than physical, but I guess the combination of both drained me…On a positive note the first few days this week I felt good enough to do some cleaning which I haven’t been able to do in months…I enjoyed being able to sweep, clean the dog fur off the couch (she has been shedding like CRAZY!) and really clean the kitchen…as the week progressed my energy has decreased a bit but I’m still feeling pretty good…and I will enjoy this physically feeling good for the next three days…
Maybe I will be surprised and the chemo on Monday won’t kick my butt like it did last time…
Emotionally, I feel kind of crushed…I decided to message someone that I felt hasn’t been a support to me through this time and the message I got back was basically that who I am and what people THINK they know about me have made me alone…apparently I am disrespectful, and I expect too much, which makes people not want to do anything for me…
I have no doubt that this person could have taken some things I’ve said or done as disrespectful…I would even agree with her…but I didn’t know that it would result in my being completely dismissed…I’ve been trying really hard this week not to let what this person said to change how I see myself, but it has been hard…
I’m sorry that she thinks she knows what I expect when she hasn’t spoken to me in over two months…I can only surmise that what she thinks is what other people in the church think as well and that is why I have not been supported…I guess I didn’t realize I was such a horrible person and to reach out to me would be such a burden…it is to the point now if I was reached out to I’m not sure I would be open to it…(to be fair, there were a few people who came together and mowed mom’s lawn for a few weeks this summer, it was a great help for sure).
I swear if I see one more T.V. show or read one more story where someone had cancer and were surround by people who supported them, came to help them ect…I might just kick the TV in…I’m pretty secure in who I am, but this has knocked me to my knees…I would challenge anyone who thinks they know me to reevaluate…I was talking to one of my best friends yesterday and just talked about what has happened (I was really honest about everything) and she was just so confused as well…it makes my heart hurt that the people who REALLY get me, who have seen my soul, the people who know me, and love me, live SO far away…if I could fly to the middle of nowhere Wisconsin and be loved on I would…in a heart beat…and if she didn’t live 11hrs away, have two SMALL children, was a teacher, and have a husband who had surgery on his hip and had to be there to support him…I know she would be HERE, she may not be HERE physically but she is present emotionally, and it is genuine…and oh my word that is everything!
When you die do you want to be remembered that you worked at the church everyday or that you WERE the church everyday? That is the last I will have to say about how I am doing emotionally for a while…I don’t want to beat a dead horse…and I don’t feel like I ‘m doing a very good at articulating it…
Unfortunately that does not happen…I was supposed to get chemotherapy #8 today…it has been postponed until Monday because my liver enzymes are again too high…
This is a disappointment because I work hard to try and be able to still work while getting treatment and moving chemo to Monday means that I will be missing an ENTIRE week of work…which is essentially two weeks of pay, I just got paid today and will not get paid again for a month…it is overwhelming…when you get sick no one pays you…it isn’t your new job…everyone may say to you “Your job is to take care of yourself and get better” taking care of yourself doesn’t not come with a paycheck…and my car loan company or mom’s mortgage holders don’t accept payment in the form of doctors notes…mom tells me not to worry about it, she tells me not to feel bad that I can’t work…but it is hard not to feel bad…I feel so helpless…
The last chemo laid me up for a week, in bed too exhausted to do anything more than go to the bathroom…the doctor said that I should expect the chemo I get on Monday to effect me the same way…he said that I have had HIGH doses of chemo for a long period of time and that it is expected that the exhaustion will just get worse…so the tiredness I experienced last time was not unexpected and he is not too worried about that…
I will be getting another PET scan on October the 23rd and see the doctor to discuss the results on the 27th…if there is still activity he will be referring me to the University of Indiana…Dr. Robinson…I THINK he is a hematologist oncologist (specialist in cancers of the blood)…if I am referred to him one of two things could happen…
#1. He could recommend just monitoring the activity and see if it grows/how quickly it grows ect…
#2. He could after some testing…recommend a bone marrow transplant…I’m a little freaked out by this news…Dr. M said that I may have to have another bone marrow biopsy ect…for Dr. R to determine the right course of action…Dr. M also said that while that was getting figured out I could receive more chemo than just the one coming up on Monday…I’m scared to google bone marrow transplant because I think I would be even more freaked out…maybe later tonight when I have more courage I will see what a transplant entails…
Of course nothing is certain, these are all just possibilities if there is still activity present after the next PET scan…but it is much better for me to be emotionally prepared for what COULD happen…then IF it does happen I won’t fall apart…
What little hair I have grown back has been sensitive this week, and just today I was able to easily pull it out…so I guess tonight I might have mom go ahead and shave it again…
Tomorrow afternoon I will be getting another blood transfusion because my numbers are still low…I just can’t get to normal…
I’ve been a bit tired this week, but thought it was more emotional than physical, but I guess the combination of both drained me…On a positive note the first few days this week I felt good enough to do some cleaning which I haven’t been able to do in months…I enjoyed being able to sweep, clean the dog fur off the couch (she has been shedding like CRAZY!) and really clean the kitchen…as the week progressed my energy has decreased a bit but I’m still feeling pretty good…and I will enjoy this physically feeling good for the next three days…
Maybe I will be surprised and the chemo on Monday won’t kick my butt like it did last time…
Emotionally, I feel kind of crushed…I decided to message someone that I felt hasn’t been a support to me through this time and the message I got back was basically that who I am and what people THINK they know about me have made me alone…apparently I am disrespectful, and I expect too much, which makes people not want to do anything for me…
I have no doubt that this person could have taken some things I’ve said or done as disrespectful…I would even agree with her…but I didn’t know that it would result in my being completely dismissed…I’ve been trying really hard this week not to let what this person said to change how I see myself, but it has been hard…
I’m sorry that she thinks she knows what I expect when she hasn’t spoken to me in over two months…I can only surmise that what she thinks is what other people in the church think as well and that is why I have not been supported…I guess I didn’t realize I was such a horrible person and to reach out to me would be such a burden…it is to the point now if I was reached out to I’m not sure I would be open to it…(to be fair, there were a few people who came together and mowed mom’s lawn for a few weeks this summer, it was a great help for sure).
I swear if I see one more T.V. show or read one more story where someone had cancer and were surround by people who supported them, came to help them ect…I might just kick the TV in…I’m pretty secure in who I am, but this has knocked me to my knees…I would challenge anyone who thinks they know me to reevaluate…I was talking to one of my best friends yesterday and just talked about what has happened (I was really honest about everything) and she was just so confused as well…it makes my heart hurt that the people who REALLY get me, who have seen my soul, the people who know me, and love me, live SO far away…if I could fly to the middle of nowhere Wisconsin and be loved on I would…in a heart beat…and if she didn’t live 11hrs away, have two SMALL children, was a teacher, and have a husband who had surgery on his hip and had to be there to support him…I know she would be HERE, she may not be HERE physically but she is present emotionally, and it is genuine…and oh my word that is everything!
When you die do you want to be remembered that you worked at the church everyday or that you WERE the church everyday? That is the last I will have to say about how I am doing emotionally for a while…I don’t want to beat a dead horse…and I don’t feel like I ‘m doing a very good at articulating it…
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