Just not myself

LorrieSho
LorrieSho Member Posts: 6
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I don't even know where to begin.. I am new here but not new to cancer. I was diagnosed stage 3 non hodgkins diffuse large cell b back in Jan of 2012 and I've had the Chop X , 32 days of radiation and I'm on 10 out of 12 of the rituxan maintenance due in August.  I am 46 years old and mother of an 8 year old daughter and 14 year old son..

I have had multiple complications and just got out of the hospital after a 2 week stay last week.  I'm so angry inside.. I mean I don't even know who I am anymore.  I get easily frustrated and just feel overall out of sorts.  I went into the hospital due to migraines and severe back pain and ended up with so many other complications I have now left in a walker/wheelchair.  Friday before I was released I did 500 steps without a walker then after a new migraine for me or so they say it was *still not sure I believe them* I ended up have stroke like symptoms.. they are calling it a Hemiplegic Migraine and I lost use of my left side .. the neuro saw it and assured me it was that and not a stroke but after having been misdiagnosed for a year by another MD when I had cancer I just don't know.  So two days later I made it 15 steps without needing to sit.  I don't feel my legs.. 90% of the time i have minimal feeling in my arms and just looking at the stairs now I feel like I want to cry at the thought of making it to the top to take a shower.

The thing is... I am not so normally down.. angry... irritable.. not sure what it is.  Maybe I just want things to be normal as I am sure all of us do and I am not one of those that wants pity.. I know that there are others far worse then me I am just wondering if any of you have ever felt this way or if there was some damage done to me during my stay..

 

Thanks in advance

Comments

  • Rocquie
    Rocquie Member Posts: 869 Member
    #2
    Welcome

    Welcome to our group, Lorrie. I'm so sorry you are having all these problems. I am not familiar with hemiplegic migraines. Is it something that will go away? Are you on medications? Do you have physical therapy? 

    Surely they didn't just discharge you from the hospital with you only able to take 15 steps to face climbing the stairs alone?

    I certainly understand your feelings of frustration and anger. Going through treatment for lymphoma should be enough, right? I hope your medical team has a care plan for you that enables you to live a quality life, like other migraine sufferers do.

    Please join in any of our discussion here. We are a caring group of people who like to help others. Keep us posted about your outcomes. . .

    Blessings and hugs,

    Rocquie

     

  • NANCYL1
    NANCYL1 Member Posts: 289
    #3
    MIGRAINE, ETC., ETC.

    Lorrie:

     

    I am sorry to hear that you are going through such a terrible time.  I had two years of Rituxan infusions for Lymphoma, and see the oncologist again in Sept.  Keeping my fingers crossed.  Also had open heart surgery in Jan. of this year, followed by cardiac rehab.  I too have migraines, but without the pain, just "jumping" lights.  I have had many more of them this year, which I attribute to bigtime stress.  I also have had bad back pain, but have been blaming it on lack of exercise.  I have a bad back to begin with.  Arthritis.  Do you have any physical therapy?  A sedative?  I take Lorazepam.

     

    Nancy

     

     

  • Unknown
    Unknown
    #4
    Frustration

    Though you are currently in a worse medical condition than I am, I feel and understand your frustration. You might think of trying what has worked for me at some of the very difficult and trying times in my life. Just zone out and simply refuse to be scared or intimidated. Become a "minimally emotional" observer first, and a participant second. You will soon find yourself making better decisions. I found out at a very young age that once you accept your mortality, very few things in life can intimidate you. Sometimes, if one is capable of doing it, just refusing to give a $hit is a viable solution. This is often mistaken for courage or bravery. I know it is easier said than done. And tempt fate. Eat things you are not supposed to for example. Refuse to conform to this situation you don't like. When you do that the whole dynamic changes. It worked for me but everyone is different.

    All my best.

  • LorrieSho
    LorrieSho Member Posts: 6
    #5
    Rocquie said:

    Welcome

    Welcome to our group, Lorrie. I'm so sorry you are having all these problems. I am not familiar with hemiplegic migraines. Is it something that will go away? Are you on medications? Do you have physical therapy? 

    Surely they didn't just discharge you from the hospital with you only able to take 15 steps to face climbing the stairs alone?

    I certainly understand your feelings of frustration and anger. Going through treatment for lymphoma should be enough, right? I hope your medical team has a care plan for you that enables you to live a quality life, like other migraine sufferers do.

    Please join in any of our discussion here. We are a caring group of people who like to help others. Keep us posted about your outcomes. . .

    Blessings and hugs,

    Rocquie

     

    Hi  Rocquie,

     

    Yes they actually DID send me home. the Hemiplegic Migraines cause stroke like symptoms.  I am waiting to hear back from another neurologist in another hospital to make sure that is what is going on for sure as I have had more then my fair share of doctors that failed to diagnose a problem correctly including my cancer.  I climb the stairs with my son or husband standing behind me. 

     

    I think that this is part of the problem... you say "team".  I see individuals that I am not even sure talk to each other.  Thank you for your warm welcome

  • LorrieSho
    LorrieSho Member Posts: 6
    #6
    NANCYL1 said:

    MIGRAINE, ETC., ETC.

    Lorrie:

     

    I am sorry to hear that you are going through such a terrible time.  I had two years of Rituxan infusions for Lymphoma, and see the oncologist again in Sept.  Keeping my fingers crossed.  Also had open heart surgery in Jan. of this year, followed by cardiac rehab.  I too have migraines, but without the pain, just "jumping" lights.  I have had many more of them this year, which I attribute to bigtime stress.  I also have had bad back pain, but have been blaming it on lack of exercise.  I have a bad back to begin with.  Arthritis.  Do you have any physical therapy?  A sedative?  I take Lorazepam.

     

    Nancy

     

     

    Hi nancy

    Yeah the back pain and migraines are still heere. I"m terrified as my vision is getting worse and overall my condition is getting worse and worse.  The jumping lights are not a good thing and I dont know what is triggering these migraines.  After the one in the hospital I lost use of my entire left side for almost 2 days  I am working on physical therapy to be honest I just wanted to take some time to get over all the news.  I feel like my life is not my own and I'm madder then hell about it.  I know I need to accept it I am just not sure how to.  A sedative ... lol they gave me xanax and said that I need to see a psychiatrist to assist me better... I dont know I am not sure that there is any doctor I haven't seen that ends with the letters "ist".  Is this normal?

  • LorrieSho
    LorrieSho Member Posts: 6
    #7
    unknown said:

    Frustration

    Though you are currently in a worse medical condition than I am, I feel and understand your frustration. You might think of trying what has worked for me at some of the very difficult and trying times in my life. Just zone out and simply refuse to be scared or intimidated. Become a "minimally emotional" observer first, and a participant second. You will soon find yourself making better decisions. I found out at a very young age that once you accept your mortality, very few things in life can intimidate you. Sometimes, if one is capable of doing it, just refusing to give a $hit is a viable solution. This is often mistaken for courage or bravery. I know it is easier said than done. And tempt fate. Eat things you are not supposed to for example. Refuse to conform to this situation you don't like. When you do that the whole dynamic changes. It worked for me but everyone is different.

    All my best.

    Oh i dont think I'm worse off then anybody else.. pain is pain and frustration is frustration.. maybe i need to accept my mortality . I just have my kids that make that next to impossible.  I am tired of the same ole same ole stuff .. NEVER have I gotten good news from the doctors and it's always someting more and more and more as time goes on   I will think on what you said and thank you for your well wishes.. heres to us all

  • Unknown
    Unknown
    #8
    LorrieSho said:

    Oh i dont think I'm worse off then anybody else.. pain is pain and frustration is frustration.. maybe i need to accept my mortality . I just have my kids that make that next to impossible.  I am tired of the same ole same ole stuff .. NEVER have I gotten good news from the doctors and it's always someting more and more and more as time goes on   I will think on what you said and thank you for your well wishes.. heres to us all

    Children

    Yes, children and family are what makes it hard to  adopt a more detatched view. My kids are grown but I have a grandchild. We have a natural desire to provide for them. However sometimes our fears, frustrations and concerns can unintentionally transfer to them. My mother died recently from a lingering illness without ever knowing I had struggled with cancer for three years. I feel good about that. I think you are doing very well. This board is a good place to vent and talk without  putting an emotional load on your kids. You must be a wonderful mother.! Lucky kids!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #9
    unknown said:

    Children

    Yes, children and family are what makes it hard to  adopt a more detatched view. My kids are grown but I have a grandchild. We have a natural desire to provide for them. However sometimes our fears, frustrations and concerns can unintentionally transfer to them. My mother died recently from a lingering illness without ever knowing I had struggled with cancer for three years. I feel good about that. I think you are doing very well. This board is a good place to vent and talk without  putting an emotional load on your kids. You must be a wonderful mother.! Lucky kids!

    Always !

     

    You always nail it, GKH. 

    I have long-ago adopted a similar attitude toward physical pain: Ignore it.  (In effect, a form of detachment) I could give examples, but getting ready to head out the door. Of course I share symptoms with my medical team, but not in a way that lets it affect me.

    I laugh at it, and tell it it has no power over me.  You do not feel the pain any less than you otherwise would. The difference is in the reaction to that pain.  So far, I'm winning.... It is the basic attitude of the Latin philosophy known as Stoicism (Cicero and Seneca were both Stoics).   Although a Christian myself, it is an attitude that can be adopted by anyone in control of their own body and their own emotions.

    I am not "recommending" anything to anyone. I am just contributing a thought regarding what works for me.  Vaguely similiar to the Marine Corps slogan that I used to see on recruiter billboards,   "Pain is weakness leaving the body."   Let it be gone.

    Watch the final fight scene with Mel Gobson in the original Lethal Weaponmovie. Mel has been nearly beaten to death, but stands up and taunts martial arts expert Gary Busey, "Come on ! Come on ! Is that all you got !  "

    This is my song sung to my former cancer.  I recommend it to any patient.  It is my world-view.   (112,000,000 hits ! )

    https://www.youtube.com/watch?v=Xn676-fLq7I&list=RDXn676-fLq7I

    max

    .

     

     

     

    .

  • Unknown
    Unknown
    #10
    Max Former Hodgkins Stage 3 said:

    Always !

     

    You always nail it, GKH. 

    I have long-ago adopted a similar attitude toward physical pain: Ignore it.  (In effect, a form of detachment) I could give examples, but getting ready to head out the door. Of course I share symptoms with my medical team, but not in a way that lets it affect me.

    I laugh at it, and tell it it has no power over me.  You do not feel the pain any less than you otherwise would. The difference is in the reaction to that pain.  So far, I'm winning.... It is the basic attitude of the Latin philosophy known as Stoicism (Cicero and Seneca were both Stoics).   Although a Christian myself, it is an attitude that can be adopted by anyone in control of their own body and their own emotions.

    I am not "recommending" anything to anyone. I am just contributing a thought regarding what works for me.  Vaguely similiar to the Marine Corps slogan that I used to see on recruiter billboards,   "Pain is weakness leaving the body."   Let it be gone.

    Watch the final fight scene with Mel Gobson in the original Lethal Weaponmovie. Mel has been nearly beaten to death, but stands up and taunts martial arts expert Gary Busey, "Come on ! Come on ! Is that all you got !  "

    This is my song sung to my former cancer.  I recommend it to any patient.  It is my world-view.   (112,000,000 hits ! )

    https://www.youtube.com/watch?v=Xn676-fLq7I&list=RDXn676-fLq7I

    max

    .

     

     

     

    .

    Stoicism

    I had not even thought of it but my approach is a form of stoic philosophy. As Max says, it is not a religion but an approach to life. I need to read up on it. The basic concept is that you sort your life into things you can and cannot control - " fated" and "unfated" and focus on what you can influence and ignore, even mock, what you cannot change. As I rembember it (may not be exactly correct) emperor Marcus Aurelius was one of the most famous stoics. It was he who the AA quotes in their famous line "God give me the serenity to accept things which cannot be changed;Give me courage to change things which must be changed;And the wisdom to distinguish one from the other". Aurelius was a Roman Emperor who chose to go to the fronts and die with his legions rather than simply stay in Rome and issue orders.

  • LorrieSho
    LorrieSho Member Posts: 6
    #11
    unknown said:

    Stoicism

    I had not even thought of it but my approach is a form of stoic philosophy. As Max says, it is not a religion but an approach to life. I need to read up on it. The basic concept is that you sort your life into things you can and cannot control - " fated" and "unfated" and focus on what you can influence and ignore, even mock, what you cannot change. As I rembember it (may not be exactly correct) emperor Marcus Aurelius was one of the most famous stoics. It was he who the AA quotes in their famous line "God give me the serenity to accept things which cannot be changed;Give me courage to change things which must be changed;And the wisdom to distinguish one from the other". Aurelius was a Roman Emperor who chose to go to the fronts and die with his legions rather than simply stay in Rome and issue orders.

    your right gkh

    I struggle with this mainly because it seems like with each year things get worse. I mean what do you look forward to??? I don't know I feel like I"m in a tunnel w/ no light .  I need to find that I guess and do as yo usaid try to accept what is... 3 members of my family now have cancer my brother was diagnosed stage 3 aml leukemia 1 year affter me and my father now with prostate.. so clearly it's not something i could control

Discussion Boards