I'm learning alot this week about myself. I have had to travel to Chicago for work for a full week and it is really only the second time I've been away from home since. I'm nervous and anxious to be myself and do what I need to do for work, to prove that I am still capable of my responsibilities - to prove that I am still effective in my role. Just simply being me is a lot of stress. That may sound silly, but when you wake up at 6am to a fat face, swollen eyes and sheet marks all over your face and body. I shower and get dressed, do a few emails, grab some coffee and head to my meeting. I've done the best I could with my hair and make up. I walk in the room holding my head high until I see the reaction on my co-workers faces to my appearance. I try to ignore them, to pretend nothing is wrong. Some of these folks I haven't seen in months, some don't know what's happened. I know that my looks are more noticeable to me than to anyone else and I have never been so self-aware in my whole life. The hair that ended up on the small hotel bathroom floor was enough to cry over, but I'm here doing my best to sound normal and familiar - Good Morning - I say to my team, smile and find a seat.
To stop and allow "life" to go on around me is really hard. To try to pretend that I'm OK even tho' I look very "off", it's exhausting. I feel as tho' I've just walked into a room completely naked.
There is nowhere to go, nowhere to hide, nowhere to not be seen.
I do this all week long, feeling strong and proud that I'm doing what I'm supposed to be doing. Does my appearance play a role in my relationships? Do others look at me at not my best, something's wrong, she musn't feel well, she looks tired, she can't handle the job?? I can do this, I'm the same person, I still have the same skillset, I am competent, I am still Lynne. I must make them believe me. I try not to look in mirrors, but that is impossible. There is always a piece of hair that needs a new place, or a foundation touch up that needs attention. I have never in my 44years carried make up with me - maybe powder or the basics, but now I am carrying all of it. That is not me, but I cannot let myself be natural, which is unnatural in my world.
Alone at night and I cry. Not necessarily our of self pity, but sometimes out of sheer exhaustion - I can't wait to be alone again - I can't wait to go unnoticed, I can't wait to be just me.
Wednesday, June 8, 2011
Saturday, May 28, 2011
Gone but not forgotten
Well it's been awhile since I've written and I've got alot of catching up to do.
On May 20, 2011 my doctor has officially ruled that I am in REMISSION! YAY! Wow. Crazy deep deep dark emotions that have been lifted off my shoulders. Incredible ride for the past 5.5 months. The medication, Gleevec, has been working it's magic, even my doctors are impressed with how quickly we got this under control. whew....
About the same time we got that news, I found a counselor that I liked and was given anti-depressants. I'm feeling 1000 times better!! It seems like almost every worry went away when I heard the R word. Now I can settle in, understand that it is a marathon not a sprint. Even tho' it is a lifelong illness, I can trust and try to relax knowing that I am OK. For now, I am OK. If the drug stops working or something reverses my progress, well I'll worry about that when I have to. For now, I can attempt to get back to normal. I am smiling once again.
I wouldn't be Lynne if I didn't still have some demons talking to me and keeping my head full of negative thoughts, but I am fighting those with everything I've got. Cancer is not winning this, I am. Cancer cannot take my life right now, I'm still using it.
Now if I could get a few other things back in line with normal, I'd be happy. Some might say that I'll never be happy, that I'll always find something to complain about. Maybe, maybe not. Is life about striving for perfection or your perception of it. Is life is about dealing with what's in front of you, what is on your plate at that given moment, what's been dealt to you.
One area of concern is my self confidence and intimacy. I look like an alien in the mornings with swollen puffy eyes. I can wake up totally charged and ready for the day until I see myself. I dyed my own hair. It went from red to brown to orange. I'm pale as a ghost. I am bruising more easily (which is a big deal for me since I bruised easily before cancer). So I'm feeling fine, strong, healthy and happy. Then I catch a glimpse of myself in a mirror, or a car window and it's like I'm looking at a different person. I look tired and dreary. I look weary and worn out, washed out. My hair is some see through strange new color and my eyes are baggy and my face seems to weigh 10 pounds. I've aged 10 years in less than 6 months.
Healthy - check
Happy - working on it
Pretty - not so much
But what can I do - stay at home? No, that's not me. I do whatever I used to do for the most part. Looks don't matter, right? I'm getting used to the eyes - sunglasses help alot and mornings are the worst. Staying at home and hiding has been comforting to me though. There are alot of times that all I want to do is play slots on the computer and be by myself. In some instances it is easier to be alone that to do what everyone else is doing, which is getting drunk. It's been a really rainy spring coming off a really dreary and cold winter. We haven't had much sun at all. I bought a month's worth of tanning sessions yesterday. This is totally not me. I hate tanning beds and refuse to pay for them for the girls, who love them. I figured a month's worth of tanning wouldn't hurt - I have cancer already. Lol. Besides people always look healthier with a tan and I desperately need some color.
So everything is on the right path to be getting back to normal with me and I'm beginning to try to understand and close the gap that has wedged in between me and my husband. We seem to be tip toeing around each other, not really talking, more avoiding the issues than address them. This is typical in our relationship anyway. I need to talk things out (one big reason for starting this blog) and he likes to ignore difficult conversations until they just simply disappear. Things have certainly changed me since 12/7/10 and I'm sure he's been affected too, though he doesn't like to discuss it. My self confidence has taken a big hit, my physical appearance has changed, my outlook on life is different, my priorities are different and I'm finding comfort in being alone instead of being with him. He is extremely social and needs his friends and I try very hard to let him be himself. The problem is when we are together, we don't know how to act with each other anymore. Intimacy means different things to us. Emotional intimacy will bring physical intimacy for me and he doesn't seem interested in investing the time I need to connect with me emotionally again. We are not good talkers together. We are on different planets. Now that I'm in remission, things should be back to normal sexually, right? I don't feel sexual or even attractive for that matter.
I've always been a jeans and tshirt kinda girl and I don't find it necessary to dress to impress. Knowing my husband, and most men, they like to see women all dressed up nice and sexy. I do try to wear something nicer than just my usual. Unless I look exceptional, the dressed nicely, but not over the top doesn't seem to garner much notice. When you don't feel attractive and are surrounded by fake boobs and desperate housewives it's pretty hard to keep someone's attention.
He has been doing a terrific job lately of making time for me, coming home after work, going out to eat, being "here". But isn't that what husbands and fathers are supposed to do? What are wives and mothers supposed to do? Why would you expect praise because you came straight home from work? Why does doing the right thing mean earning points?
Zero libido for me, zero. Not sure if it's a factor of age, medication, emotion, confidence,resentment, disappointment, disgust. Probably a combination of all - a recipe for lack of interest. Guaranteed.
Seems like there are two place I flip flop to in my marriage. People tell me how very much he loves me and I do believe that. I decide to go with it, to dive back in and be happy, to trust that he understands. Something happens and I'm heartbroken. Mad at myself for being so gullable...again. So I go the other direction and become more guarded, cautious maybe even distant. There goes the intimacy, emotional and physical. The balance is somewhere in the middle and I'm having a hard time finding it, or keeping it when I do find it.
So who am I now that I have cancer? Where did Lynne go? How do I get her back - without the baggage? Where do I put the baggage when I'm not wallowing in it? Why do I prefer to be alone, but feel sad and left out when I am? Where is the balance, middle ground? Why am I still able to sob deeply so easily. Give me 2 seconds and I'm a waterfall...still. Why do I feel the need to protect myself? Protection from people that have hurt me and people that have never hurt me. Protection from an illness that I can't control? I can't stop it - if it wants to come back, it will. How can something have so much power over someone? Remission means gone but not forgotten. Remission means learning to leave the baggage in the basement.
On May 20, 2011 my doctor has officially ruled that I am in REMISSION! YAY! Wow. Crazy deep deep dark emotions that have been lifted off my shoulders. Incredible ride for the past 5.5 months. The medication, Gleevec, has been working it's magic, even my doctors are impressed with how quickly we got this under control. whew....
About the same time we got that news, I found a counselor that I liked and was given anti-depressants. I'm feeling 1000 times better!! It seems like almost every worry went away when I heard the R word. Now I can settle in, understand that it is a marathon not a sprint. Even tho' it is a lifelong illness, I can trust and try to relax knowing that I am OK. For now, I am OK. If the drug stops working or something reverses my progress, well I'll worry about that when I have to. For now, I can attempt to get back to normal. I am smiling once again.
I wouldn't be Lynne if I didn't still have some demons talking to me and keeping my head full of negative thoughts, but I am fighting those with everything I've got. Cancer is not winning this, I am. Cancer cannot take my life right now, I'm still using it.
Now if I could get a few other things back in line with normal, I'd be happy. Some might say that I'll never be happy, that I'll always find something to complain about. Maybe, maybe not. Is life about striving for perfection or your perception of it. Is life is about dealing with what's in front of you, what is on your plate at that given moment, what's been dealt to you.
One area of concern is my self confidence and intimacy. I look like an alien in the mornings with swollen puffy eyes. I can wake up totally charged and ready for the day until I see myself. I dyed my own hair. It went from red to brown to orange. I'm pale as a ghost. I am bruising more easily (which is a big deal for me since I bruised easily before cancer). So I'm feeling fine, strong, healthy and happy. Then I catch a glimpse of myself in a mirror, or a car window and it's like I'm looking at a different person. I look tired and dreary. I look weary and worn out, washed out. My hair is some see through strange new color and my eyes are baggy and my face seems to weigh 10 pounds. I've aged 10 years in less than 6 months.
Healthy - check
Happy - working on it
Pretty - not so much
But what can I do - stay at home? No, that's not me. I do whatever I used to do for the most part. Looks don't matter, right? I'm getting used to the eyes - sunglasses help alot and mornings are the worst. Staying at home and hiding has been comforting to me though. There are alot of times that all I want to do is play slots on the computer and be by myself. In some instances it is easier to be alone that to do what everyone else is doing, which is getting drunk. It's been a really rainy spring coming off a really dreary and cold winter. We haven't had much sun at all. I bought a month's worth of tanning sessions yesterday. This is totally not me. I hate tanning beds and refuse to pay for them for the girls, who love them. I figured a month's worth of tanning wouldn't hurt - I have cancer already. Lol. Besides people always look healthier with a tan and I desperately need some color.
So everything is on the right path to be getting back to normal with me and I'm beginning to try to understand and close the gap that has wedged in between me and my husband. We seem to be tip toeing around each other, not really talking, more avoiding the issues than address them. This is typical in our relationship anyway. I need to talk things out (one big reason for starting this blog) and he likes to ignore difficult conversations until they just simply disappear. Things have certainly changed me since 12/7/10 and I'm sure he's been affected too, though he doesn't like to discuss it. My self confidence has taken a big hit, my physical appearance has changed, my outlook on life is different, my priorities are different and I'm finding comfort in being alone instead of being with him. He is extremely social and needs his friends and I try very hard to let him be himself. The problem is when we are together, we don't know how to act with each other anymore. Intimacy means different things to us. Emotional intimacy will bring physical intimacy for me and he doesn't seem interested in investing the time I need to connect with me emotionally again. We are not good talkers together. We are on different planets. Now that I'm in remission, things should be back to normal sexually, right? I don't feel sexual or even attractive for that matter.
I've always been a jeans and tshirt kinda girl and I don't find it necessary to dress to impress. Knowing my husband, and most men, they like to see women all dressed up nice and sexy. I do try to wear something nicer than just my usual. Unless I look exceptional, the dressed nicely, but not over the top doesn't seem to garner much notice. When you don't feel attractive and are surrounded by fake boobs and desperate housewives it's pretty hard to keep someone's attention.
He has been doing a terrific job lately of making time for me, coming home after work, going out to eat, being "here". But isn't that what husbands and fathers are supposed to do? What are wives and mothers supposed to do? Why would you expect praise because you came straight home from work? Why does doing the right thing mean earning points?
Zero libido for me, zero. Not sure if it's a factor of age, medication, emotion, confidence,resentment, disappointment, disgust. Probably a combination of all - a recipe for lack of interest. Guaranteed.
Seems like there are two place I flip flop to in my marriage. People tell me how very much he loves me and I do believe that. I decide to go with it, to dive back in and be happy, to trust that he understands. Something happens and I'm heartbroken. Mad at myself for being so gullable...again. So I go the other direction and become more guarded, cautious maybe even distant. There goes the intimacy, emotional and physical. The balance is somewhere in the middle and I'm having a hard time finding it, or keeping it when I do find it.
So who am I now that I have cancer? Where did Lynne go? How do I get her back - without the baggage? Where do I put the baggage when I'm not wallowing in it? Why do I prefer to be alone, but feel sad and left out when I am? Where is the balance, middle ground? Why am I still able to sob deeply so easily. Give me 2 seconds and I'm a waterfall...still. Why do I feel the need to protect myself? Protection from people that have hurt me and people that have never hurt me. Protection from an illness that I can't control? I can't stop it - if it wants to come back, it will. How can something have so much power over someone? Remission means gone but not forgotten. Remission means learning to leave the baggage in the basement.
Sunday, May 1, 2011
Ch Ch Ch Ch Changes.....
Why is it that I'm so easily disappointed in some people when they do or don't do what I think is the right thing to do? Who am I to say that my morals, standards or opinions are the "right" way?
Why do we get upset when we feel let down by someone? Why can't people change for other people when you ask numerous times for them to act differently because their actions are upsetting you? What does it mean about your relationships when someone isn't willing to compromise? Why do those being asked to change think that they've done everything in their power to honor your wishes, yet you feel as they've done nothing. Must be something more to the relationship than you thought. Or is it something less?
Why does cancer make you feel less whole? Why do you feel vulnerable, helpless, even so cautious and guarded that you become less trusting of people? Why is every single thing in your life suddenly a big deal? Where did my self confidence go? All the changes you need to make just to survive take all the normalcy out of your life and everyone one else goes on as if the bump in the road is over, while you keep a safe distance to protect yourself from what you don't know or can't understand, but now controls you. People say that now it's a good time to be a little selfish. You don't always get what you give, yet no one likes a selfish person. Why do I deserve to have people behave the way I need them to - do I have that right? Or is this about control or loss of it? Make sure your safety wall has a bridge. Mine happens to be a small one.
Why do we get upset when we feel let down by someone? Why can't people change for other people when you ask numerous times for them to act differently because their actions are upsetting you? What does it mean about your relationships when someone isn't willing to compromise? Why do those being asked to change think that they've done everything in their power to honor your wishes, yet you feel as they've done nothing. Must be something more to the relationship than you thought. Or is it something less?
Why does cancer make you feel less whole? Why do you feel vulnerable, helpless, even so cautious and guarded that you become less trusting of people? Why is every single thing in your life suddenly a big deal? Where did my self confidence go? All the changes you need to make just to survive take all the normalcy out of your life and everyone one else goes on as if the bump in the road is over, while you keep a safe distance to protect yourself from what you don't know or can't understand, but now controls you. People say that now it's a good time to be a little selfish. You don't always get what you give, yet no one likes a selfish person. Why do I deserve to have people behave the way I need them to - do I have that right? Or is this about control or loss of it? Make sure your safety wall has a bridge. Mine happens to be a small one.
Monday, April 11, 2011
Vitality and Endurance
I'm desperately struggling emotionally lately. I've been in search of a Counselor or Therapist or someone to talk to. I've met with someone from American Cancer Society, I've called Friends for Life, LLS, Online Support Groups, Look Good Feel Great, Massage, Jin Shin Jyustu, BG Family Health. You name it, I've been looking. I had an appointment with a Phsycologist but I didn't know her appointments were only 30 minutes - I was just getting started! LOL I also didn't know she couldn't prescribe anything. She sent me to my Family Doctor. Ok - I just cried my eyes out to you and you're asking me to now go to another facility/doc/appt/copay for medication? Does everyone but me realize that the one whom I'm asking for help from can't help me? Ugh...it's been so frustrating.
I found a little book that I LOVE! It's called "There's no place like Hope" and it is written by a cancer patient and I found it to be very 'real'. It inspired the following that I wrote:
"You've invaded my body, it's comfirmed.
You've broken my heart like no other before you.
You've left my mind screaming in anguish and my Spirit hanging by a thread.
Even broken and poisoned, these are still mine, you can't have them
My Soul Belongs to Me."
I wake up crying sometimes. Well, I'm not crying when I first wake up, but it's like the light comes on and I suddenly remember just what I'm up against. The only time I'm not afraid is when I'm asleep. I'm afraid that everyday for the rest of my life will be a struggle just to get through. And if I give up, take a break or am not 100% on my guard, it will sneak back in and win. I'm afraid it can outlast me.
Let me tell you about my Jin Shin Jyustu massage. It's healing touch and rebalancing energy through touch. I very much enjoyed it. My instructor Jennifer told me that I had alot of vitality in my energy. That brought a tear to my eyes, it was like someone telling me it was going to be okay, or that I had enough strength to endure this. Later that night, I missed dinner (not intentionally) and took my Gleevec on an empty stomach. I knew better, but thought I would eat soon enough and it would be ok. I vomited like no other that night! Violently vomiting - it was wierd. I wondered if all my nervous bad energy came out of me like a volcano! The next couple of days, I wasn't quite myself - more fatigued than usual. I'm not what it was if anything, but something sure happened physically that day! I'm very much aware of what my mind and body are telling me and know that if I don't listen, I'm in big trouble. Vitality, endurance are big motivators, but fear is the biggest of all.
I found a little book that I LOVE! It's called "There's no place like Hope" and it is written by a cancer patient and I found it to be very 'real'. It inspired the following that I wrote:
"You've invaded my body, it's comfirmed.
You've broken my heart like no other before you.
You've left my mind screaming in anguish and my Spirit hanging by a thread.
Even broken and poisoned, these are still mine, you can't have them
My Soul Belongs to Me."
I wake up crying sometimes. Well, I'm not crying when I first wake up, but it's like the light comes on and I suddenly remember just what I'm up against. The only time I'm not afraid is when I'm asleep. I'm afraid that everyday for the rest of my life will be a struggle just to get through. And if I give up, take a break or am not 100% on my guard, it will sneak back in and win. I'm afraid it can outlast me.
Let me tell you about my Jin Shin Jyustu massage. It's healing touch and rebalancing energy through touch. I very much enjoyed it. My instructor Jennifer told me that I had alot of vitality in my energy. That brought a tear to my eyes, it was like someone telling me it was going to be okay, or that I had enough strength to endure this. Later that night, I missed dinner (not intentionally) and took my Gleevec on an empty stomach. I knew better, but thought I would eat soon enough and it would be ok. I vomited like no other that night! Violently vomiting - it was wierd. I wondered if all my nervous bad energy came out of me like a volcano! The next couple of days, I wasn't quite myself - more fatigued than usual. I'm not what it was if anything, but something sure happened physically that day! I'm very much aware of what my mind and body are telling me and know that if I don't listen, I'm in big trouble. Vitality, endurance are big motivators, but fear is the biggest of all.
Friday, March 25, 2011
2 steps forward and 1 step back
The past couple of weeks have been pretty good. At first, I thought I felt the reduction in meds right away and was very excited! It seemed that I felt "Lighter", had a little more pep in my step, and just in general had a very happy feeling. That didn't last long. Within 10 days, my face and hands swelled up like balloons while we were at Bristol. I knew it would be a long hard weekend, but I wanted it. Spending fun times with 18 of your closest friends camping, talking, eating, drinking....what could be better? By Sunday afternoon, I was spent. I layed down while everyone was cooking dinner and didn't get back up until 8am - about 15 hours of swollen sleep!
Back home it only took a day for my hands to return to normal size, but since then, my eyes are as swollen as ever and I'm feeling very fatigued. It's about all I can do to get through the week....then crash! I almost can't wait for evening so I can lay down or just veg out on the couch.
Finding my new normal has been hard. The difference in one day to the next is so random, I don't know whether I can face my day with confidence or if I need to hide behind Jackie O glasses!! If I have a really big day the next couple are recovery days for sure. I can't find my balance.
One thing is for certain - I am feeling better. The emotion sometimes comes from exhaustion - mentally and physically. Pretending you are fine is alot of work. Behind closed doors I like to breakdown and cry, even if it's only for 5 minutes, it's a form of release. The kind of release that you can't perform in public everytime you need to. It's that time for me to say, Okay, relax, no one is watching you and you can let go now.
Wondering where my inner strength is coming from. Will it run out? Relying on it is depleting it - be strong so you don't waste it. Will I have to fight each and every week for the rest of my life just to live? Do I have the strength to do that?
One day at a time. Be patient. Be still and know.
Back home it only took a day for my hands to return to normal size, but since then, my eyes are as swollen as ever and I'm feeling very fatigued. It's about all I can do to get through the week....then crash! I almost can't wait for evening so I can lay down or just veg out on the couch.
Finding my new normal has been hard. The difference in one day to the next is so random, I don't know whether I can face my day with confidence or if I need to hide behind Jackie O glasses!! If I have a really big day the next couple are recovery days for sure. I can't find my balance.
One thing is for certain - I am feeling better. The emotion sometimes comes from exhaustion - mentally and physically. Pretending you are fine is alot of work. Behind closed doors I like to breakdown and cry, even if it's only for 5 minutes, it's a form of release. The kind of release that you can't perform in public everytime you need to. It's that time for me to say, Okay, relax, no one is watching you and you can let go now.
Wondering where my inner strength is coming from. Will it run out? Relying on it is depleting it - be strong so you don't waste it. Will I have to fight each and every week for the rest of my life just to live? Do I have the strength to do that?
One day at a time. Be patient. Be still and know.
Monday, March 14, 2011
Full Circle
Friday March 11, 2011 was a big day. I was sitting in my doctor's office waiting for him and began crying my eyes out. I had intended to talk about needing some counseling anyway, so it was pretty obvious I'm not handling things very well. I spoke to several nurses and social workers about my feelings and they are finding an appropriate counselor for me. Whew. I cried all week - it really was a very low moment in my life.
Doctor Hayslip comes in and says "Ok, I've been thinking"...he reduced my meds from 600 to 400 mg per day! I really didn't think he would do this until June and had been working on accepting that. WOW - now we get to reduce 3 months early! I couldn't be happier!
I went from crying my eyes out and being very very very depressed to crying because I'm so elated. 30% reduction in medicine also means a 30% reduction in side effects. He reminded me that the relief in side effects, particularly the swollen eyes, wouldn't happen right away.
I am to do monthly blood draws and there is a quantitative test he will do to put a value on the number of Leukemia cells I have. This will monitor if the reduction in meds is working or not. I hope it does.
Even though I got good news, I'm still going to see a counselor. I need to accept this and put it in perspective and move on.
Doctor Hayslip comes in and says "Ok, I've been thinking"...he reduced my meds from 600 to 400 mg per day! I really didn't think he would do this until June and had been working on accepting that. WOW - now we get to reduce 3 months early! I couldn't be happier!
I went from crying my eyes out and being very very very depressed to crying because I'm so elated. 30% reduction in medicine also means a 30% reduction in side effects. He reminded me that the relief in side effects, particularly the swollen eyes, wouldn't happen right away.
I am to do monthly blood draws and there is a quantitative test he will do to put a value on the number of Leukemia cells I have. This will monitor if the reduction in meds is working or not. I hope it does.
Even though I got good news, I'm still going to see a counselor. I need to accept this and put it in perspective and move on.
Wednesday, March 9, 2011
A to Z
It's been said that God will do whatever He needs to to get your attention.
Damn, I didn't realize I was that far off track! Ouch. Well, you've got my attention now. So much so I'm reminded of how so many things have changed since I heard those 3 words.
Appetite, Attitude, Aptitude, Ability, Alone, Age, Acceptance, Anger
Bedtime, Bone Marrow, Biopsy, Blood, Beliefs
Cancer, Chromosomes, Crying, Clock, Changes, Confidence, Consumed
Diarreah, DNA, drugs, despair, December, Dreams
Eyes puffy and swollen, Employment, Esteem, Expectations, Escape
Fat face, fatigue, feelings, fear, faking, forcing, Fighting, future, 44
Gleevec, Groggy
Hair thinning, Hope, Helpless
Immodium, Inability, I can't, Inspiration
Jowls
Kevin
Leukemia, Love, Listening, Learning, Leaning, Lynne
Mirrors, Mindset, Medication, Music, Mornings
Needles, Needs, Nausea, Nerves, Naps
Outlook, Opinion, Orange Ribbons
Pain, Poison, Pills, Power, Patience
Quiet, Questioning
Relationships, Reflecting, Resistant, Refusal
Skin, Sleeping Upright, Song, Swelling, Strength, Stamina, Silence
Time, Tears, Tired, Trying, Thoughts
Understanding, Underestimating
Veins, Vodka, Visine, Vocabulary, Vomit, Vulnerability
Worries, Weight, WBC, Wishes, Wine
Xrays
Yellow teeth, Years, Yearning
Zanex (i know it's not spelled this way, but it belongs here)
Damn, I didn't realize I was that far off track! Ouch. Well, you've got my attention now. So much so I'm reminded of how so many things have changed since I heard those 3 words.
Appetite, Attitude, Aptitude, Ability, Alone, Age, Acceptance, Anger
Bedtime, Bone Marrow, Biopsy, Blood, Beliefs
Cancer, Chromosomes, Crying, Clock, Changes, Confidence, Consumed
Diarreah, DNA, drugs, despair, December, Dreams
Eyes puffy and swollen, Employment, Esteem, Expectations, Escape
Fat face, fatigue, feelings, fear, faking, forcing, Fighting, future, 44
Gleevec, Groggy
Hair thinning, Hope, Helpless
Immodium, Inability, I can't, Inspiration
Jowls
Kevin
Leukemia, Love, Listening, Learning, Leaning, Lynne
Mirrors, Mindset, Medication, Music, Mornings
Needles, Needs, Nausea, Nerves, Naps
Outlook, Opinion, Orange Ribbons
Pain, Poison, Pills, Power, Patience
Quiet, Questioning
Relationships, Reflecting, Resistant, Refusal
Skin, Sleeping Upright, Song, Swelling, Strength, Stamina, Silence
Time, Tears, Tired, Trying, Thoughts
Understanding, Underestimating
Veins, Vodka, Visine, Vocabulary, Vomit, Vulnerability
Worries, Weight, WBC, Wishes, Wine
Xrays
Yellow teeth, Years, Yearning
Zanex (i know it's not spelled this way, but it belongs here)
Tuesday, March 8, 2011
A better day
Feeling much better emotionally today. For some reason, about once a week I feel the unstoppable need to curl up in bed and cry all day. I wonder if it's related to my energy level. Since going back to work just a couple weeks ago, I realize I can handle about 5-6 days, then I'm spent. Kevin and I went out to dinner on Friday and at 8:30pm I had to lay down in the car, close my eyes and just recharge for 30 minutes. Really? I need a nap on a Friday nite? Yes, things have changed.
I have always been a bit cynical, lean towards the negative side, guarded, cautious and very careful with my relationships. I am a glass half empty kinda person. Don't know why, that's just the way I'm wired. I read someone's Facebook status (Richie) who said the glass isn't half empty or half full, it is the wrong size! :)
It's really hard to stay positive all the time. I try very very hard to, but just can't seem to always pull it off. Everything is so different. It's hard to see all things rosy through swollen eyes that serve as a constant reminder of my fate. I can't see past my fat face. My eyes used to win me compliments all the time. Now I hate mirrors.
I have always been a bit cynical, lean towards the negative side, guarded, cautious and very careful with my relationships. I am a glass half empty kinda person. Don't know why, that's just the way I'm wired. I read someone's Facebook status (Richie) who said the glass isn't half empty or half full, it is the wrong size! :)
It's really hard to stay positive all the time. I try very very hard to, but just can't seem to always pull it off. Everything is so different. It's hard to see all things rosy through swollen eyes that serve as a constant reminder of my fate. I can't see past my fat face. My eyes used to win me compliments all the time. Now I hate mirrors.
Monday, March 7, 2011
Depth
When your illness is in the very deepest part of your core, when you are producing poisonous blood, when you know that this poison lives in you, in the very depth of your bones, your being, that your chromosomes have physically changed, that your DNA is now different than what you were born with, when you have to face it, when you are forced to accept it, when life as you knew it is gone. That's reality- accept it, get on with your life, be a big girl, step up to the plate. There's no running away, no hiding. How are you going to handle it? Oh, and by the way, don't forget, you are the lucky one, be thankful.
Mixed Emotions
I haven't had my picture taken in months.
How can you stay strong on the outside when you are living a nightmare on the inside?
Did you know that the type of Leukemia that I have, CML, is the best type of Cancer you can get? Wow, that's really great news!
There's something about the word Cancer that really sticks with you, even if you do have the "good" one. Isn't it ironic, don't you think? I should be thankful, grateful, humbled that I have a treatable Cancer. I should be praising the Lord that I don't have to have traditional treatments - IV Chemo, Radiation. I should be ashamed of myself for being upset that I have Cancer...afterall, it could be worse.
How can you stay strong on the outside when you are living a nightmare on the inside?
Did you know that the type of Leukemia that I have, CML, is the best type of Cancer you can get? Wow, that's really great news!
There's something about the word Cancer that really sticks with you, even if you do have the "good" one. Isn't it ironic, don't you think? I should be thankful, grateful, humbled that I have a treatable Cancer. I should be praising the Lord that I don't have to have traditional treatments - IV Chemo, Radiation. I should be ashamed of myself for being upset that I have Cancer...afterall, it could be worse.
November 2010 - February 2011
Throughout the month of November, I was feeling a little fatigued, taking lots of cat naps and lost almost 10 pounds. I quit smoking after 20 years - my last cigarette was 11/21/2010. I used Chantix to help me stop - it really works! I attributed the fatigue and wieght loss to the side effects of Chantix, the time change (it's dark at 5pm) and wondered if my Crohn's was flairing up or not. Either way, I was happy with the wieght loss and so what if I'm in bed by 9pm....that's a good thing, right?
December 3, 2010
We went to the Clubhouse and I wasn't feeling very well. I thought I was getting a cold or something...chills, felt feverish. I took some Nyquil and went to bed at 10pm.
December 4, 2010
I woke up at 2am with excrutiating pain in my lower left back. I thought it was a Kidney Stone. Monster pain all morning, I couldn't get comfortable. I took a pain pill and went to bed thinking if it was a kidney stone there is nothing they can do about it until Monday. Drink lots of water and rest.
December 6, 2010 Monday
Kevin, my wonderful husband, took the morning off to take me to the doctor. I was in alot of pain. Doc thought I pulled a muscle and sent me home. No kidney stone. What? About an hour later, Dr. Blues called with my blood work results and said my WBC was over 30,000 and I had an appointment with a Hemotologist and Bone Marrow Biopsy the next day. This was the first time I heard her say Cancer.
Cancer? What? Look again, I have a Kidney Stone!! I just quit smoking!
December 7, 2010
I had my first Bone Marrow Biopsy at St. Joseph Hospital in Lexington, KY. Not a pleasant experience, but a necessary one. Thank Goodness Kevin was with me!
December 8, 2010
Dr. Rachel Harper called with the Bone Marrow results - CML Chronic Mylegenous Leukemia, Accelerated Phase. It's not fatal. In fact, it is treatable with chemo pills. Imagine that. I was prescribed Gleevec 400mg twice a day, which was $9,077 per month. I was referred to UK Markey Cancer Center in Lexington.
December 16, 2010
One day after my 44th birthday and both of the girls are home from school. Allyson is a Freshman at UK and Katie is a Freshman at Madison Central HS in Richmond, KY. We are going to tell the girls about my diagnosis tonight. We waited until finals were over for both of them so that we didn't overwhelm them during thier busy times. It went as expected....lots of tears, hugs and ended with a few laughs! I have great kids and a great husband!
The side effects of Gleevec are alot of bone and muscle pain in my legs and hips. At times it feels like my legs will collapse, give out, as if they can't hold me up. I can only stand for a few minutes. Pain meds are keeping me comfortable and in bed. Over time the pain subsides, probably about 4 weeks. I've had minimal stomach trouble with Gleevec, which is good since I have issues there anyway!
I decided to take a leave of absence from work. I am off for 5 weeks. During that time, I did alot of resting. I got the flu, which took me back a few strides. I continue to lose wieght - 17 pounds so far. I look as though I've aged 10 years. I can't keep up, I don't understand what's happening, I didn't ask for this, why me?
The neighborhood ladies started taking turns cooking dinners for us. That was really nice!! I've rec'd alot of support from my friends and family.
Once the pain got better, I began to have swollen puffy eyes. Some days they are so bad that I don't want to leave the house. My self esteem and self confidence have taken a beating for sure! I don't like looking in the mirror - I hate what I see.
February 22, 2011
Back to work.
December 3, 2010
We went to the Clubhouse and I wasn't feeling very well. I thought I was getting a cold or something...chills, felt feverish. I took some Nyquil and went to bed at 10pm.
December 4, 2010
I woke up at 2am with excrutiating pain in my lower left back. I thought it was a Kidney Stone. Monster pain all morning, I couldn't get comfortable. I took a pain pill and went to bed thinking if it was a kidney stone there is nothing they can do about it until Monday. Drink lots of water and rest.
December 6, 2010 Monday
Kevin, my wonderful husband, took the morning off to take me to the doctor. I was in alot of pain. Doc thought I pulled a muscle and sent me home. No kidney stone. What? About an hour later, Dr. Blues called with my blood work results and said my WBC was over 30,000 and I had an appointment with a Hemotologist and Bone Marrow Biopsy the next day. This was the first time I heard her say Cancer.
Cancer? What? Look again, I have a Kidney Stone!! I just quit smoking!
December 7, 2010
I had my first Bone Marrow Biopsy at St. Joseph Hospital in Lexington, KY. Not a pleasant experience, but a necessary one. Thank Goodness Kevin was with me!
December 8, 2010
Dr. Rachel Harper called with the Bone Marrow results - CML Chronic Mylegenous Leukemia, Accelerated Phase. It's not fatal. In fact, it is treatable with chemo pills. Imagine that. I was prescribed Gleevec 400mg twice a day, which was $9,077 per month. I was referred to UK Markey Cancer Center in Lexington.
December 16, 2010
One day after my 44th birthday and both of the girls are home from school. Allyson is a Freshman at UK and Katie is a Freshman at Madison Central HS in Richmond, KY. We are going to tell the girls about my diagnosis tonight. We waited until finals were over for both of them so that we didn't overwhelm them during thier busy times. It went as expected....lots of tears, hugs and ended with a few laughs! I have great kids and a great husband!
The side effects of Gleevec are alot of bone and muscle pain in my legs and hips. At times it feels like my legs will collapse, give out, as if they can't hold me up. I can only stand for a few minutes. Pain meds are keeping me comfortable and in bed. Over time the pain subsides, probably about 4 weeks. I've had minimal stomach trouble with Gleevec, which is good since I have issues there anyway!
I decided to take a leave of absence from work. I am off for 5 weeks. During that time, I did alot of resting. I got the flu, which took me back a few strides. I continue to lose wieght - 17 pounds so far. I look as though I've aged 10 years. I can't keep up, I don't understand what's happening, I didn't ask for this, why me?
The neighborhood ladies started taking turns cooking dinners for us. That was really nice!! I've rec'd alot of support from my friends and family.
Once the pain got better, I began to have swollen puffy eyes. Some days they are so bad that I don't want to leave the house. My self esteem and self confidence have taken a beating for sure! I don't like looking in the mirror - I hate what I see.
February 22, 2011
Back to work.
First Post
I'm a newbie blogger and want to create a diary of my experiences with Leukemia. At this point, this blog is more for selfish reasons to help me cope with my feelings, to help get it out of my system and out of my head. I may or may not tell my family or friends about it. I have a hand written diary that I started in December 2010 that I am recreating on here as a start.
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