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.
Friday, March 25, 2011
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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