SAHWCM= stay at home working cancer mom.
Man I have started so many blog posts, and keep getting interrupted to finish them. So I decided to get up early and have my coffee and my blog as my weekly therapy. I need to get back into the routine because 1. It really helps me deal with things better 2. I don't want this blog to just be about the bad things that happen or dex weeks (which seem to be when I post the most probably because I need the most therapy then)
We have had a couple of busy and rough weeks. Besides jacks bday party, I had surgery, and Lucy had duh low counts that she lost nearly 50% of her hair again. I'm told this can happen. They don't know why, there are theories, but no known answer. My theory is when the kids have low counts, the chemo that attacks fast attacking cells has no other cells to attack but the healthy fast acting ones such as hair. Am I a doctor? No. But do I see this happening when Lucy's counts go low? Yep! And so do some of my other onco moms. And it's not about the hair. I want to get that out there. I know she's beautiful regardless. It's about what it represents. It is an outward reminder that she is sick and has cancer. And for me, it was a very traumatic event. I'm not sure if it brought back flashbacks from when she was first sick and I was associating that event with hair loss or what. I was talking one of to Lucy's doctors at our affiliate, Dr. Al, whom I love and trust. And he said "you had this traumatic event and intense frontline treatment, and now that it's over, you took all of that and the memories and put them in a box on a shelf, not forgotten, but wrapped up because that part of your journey is over, and now you have a trigger that has opened that box, so all of those emotions came flooding out when the box opened" he's a genius. That is exactly what happened, and it not only triggered memories and emotions, but it triggered some major anxiety regarding going back to work in the office. It reminded me cancer is still knocking on our door. People say "oh, you're not done with treatment? Or this is the easy part" none of this is easy. And yes, Lucy is in remission, yes, we are done with a lot of the intense treatments, but we still have a year to go and things still change on a weekly basis. I'm so nervous about leaving her and going back to the office party time. I plan on going back part time in October and full time in January. And I was so blessed to have my employer give me this time to work from home, but it hasn't been easy. It's not that I'm a telecommuter and stay home mom. I'm a telecommuter, stay at home mom with a kid with cancer and another child who is on summer break so requires equal attention 24-7. When jack was in school, it was a little bit easier. Only because we had 8 hrs and tag teamed everything. But anybody with more than one child (healthy even) knows that 2 kids may as well be 20! Ha! And it's not like I had the mornings to be a SAHM, and evenings to do my work, it is all shoved into pockets and hours here and there. It's multi-tasking every minute and no separation. So while going back to the office part time will help with that, I still have to deal with working while at home, taking care of Lucy, taking her to her appointments, and then dealing with separation anxiety, as well as the kids extra curricular activities.
Back to the comment made my Dr Al, zach went to our psychiatrist to get his Meds refilled and was basically telling him the same thing about anxiety about leaving Lucy, and her hair falling out, etc. Our doc said "what you are telling me is the exact same thing soldiers tell me when they come home from war. You guys were not out killing others or protecting your own life, but you have been in a war zone with cancer and protecting your daughters life. Which can almost be worse" zach said "we deal with nothing like they do". And our doc said "that's where you are wrong. You deal with the same
Emotions. Life isn't simple anymore. You don't just worry about the mundane things and you have a different perspective on life, like many soldiers do. You are now expected to take those emotions and go back to "normal" when there is no normal for you anymore. Things that used to consume your day such as meetings, co workers, etc are no longer of significance. Cancer, chemo, treatments, constantly worrying an checking on Lucy, and experiencing the loss of many children have changed your view." and it's so
Interesting that he said that because two new studies just came out regarding parents of children with cancer and PTSD. It has been approved as an official diagnosis. While I would never compare our lives to those fighting for our freedom as being the exact same, it's still the same process. Different circumstances, but same outcome. I imagine this is true of anybody with an ill child, not just cancer, or to those who lost a child, but the study was specifically on cancer parents. Interesting. And scary.
So what's the difference between a stay at home mom or a working mom and a stay at home cancer mom?
1 planning. Maybe it gets interrupted once in a while, but I found my life before as a working mom was filled with planning, and for the most part, I was able to plan. I can't do that now very effectively.
2. You could separate your home/work life as a working mom. Most of the time, even during busy peaks and long hours, I still made a commitment to leaving work at work. I had JUST managed the work/life balance before Lucy got sick.
3. SAHM never get a vacation. They are on 24/7. Same with me only I have to add to other jobs into the mix. Cancer and the office. So that makes me on 24/7/365. So after the kids go to bed is often time to work or before they get up in the morning.
4. As a cancer mom, I constantly worry about relapse, reactions, fevers, chemo, hair loss, and am in a world where a child I know dies almost every day.
So I don't want you to get the wrong impression that I'm "whining" because I have a job and get to be home with my kids. I'm venting. Because I have no other way to let this out. And keeping it in only makes me less productive. I'm grateful to have a job when many don't, I'm grateful to have two children who are living, even if one is constantly battling, when some have lost their child or others aren't able to have children. And I am grateful to
Have had this time with them at home when many parent would love that option. And out of all my titles I would say stay at home is probably my weakest link. My house is a mess, laundry is piled up, I have a stack of mail to sort and bills to pay. And our front yard looks like hillbillies live here (which maybe they do). But all in all, I would say that is the most constant and consistent thing in this journey. I wasn't ever good at the "home making" piece even when I was JUST a stat at home mom, or JUST a working mom, or JUST a cancer mom. So in this world of chaos, it's good to have one thing remain the same ;)
Hats off to you mamas who are awesome home makers, working opt not!! That is a job I don't care to ever master! ;)
Friday, July 20, 2012
Wednesday, July 18, 2012
Jack's 7th birthday
I am going to go ahead and let you know, this is the first of many posts to come in the next day or so. I have started so many, but been busy and haven't had time to finish any of them! As last year, I'm continuing with a happy birthday letter to my son. He turned 7!! Wow!! That must mean
An adult and an ok mom. As long as they survive toddler hood, I think every parent should get a "hell yea, you didn't kill them" medal!! Lol you know the years they have no fear and try everything and stress the hell out of you!! Jack is long past that and turning out to be such a sweet boy. He still has a few issues, but I can't blame him for what he's gone through. I Dont know if you have seen parenthood with Steve Martin, but jack is like Kevin in that movie. He easily cries over things and stresses out about everything! Sometimes he gets overwhelmed and has a break down, and small things can overwhelm him. Just the excitement of his birthday had the poor kid stressed out and crying. Anyhow, here is a letter to Jack.
Dear Jack:
Wow!! I can't believe you are growing from a baby to a small person to a responsible kid right in front of my eyes. When I look into your eyes, I still
The baby that I had. Sometimes when you sleep I like to just stare at you. Yes, moms can be weird, you'll soon learn why. But to me, while you sleep, you still look like that tiny baby we brought home with us. I have loved watching you grow up, and with each year, your coming into your own even more. I find you to be a very funny little boy with a great laugh. Your laugh is contagious, and we have needed that over the last year.
You really did a wonderful job in first grade considering we had to fight you to go to kindergarten. You also had some rough moments to deal with over the last year, and you have done nothing but treat Lucy so nice during her hard days. Now her good days are a different story. You two would beat each other to a pulp if we let you. Which is normal. And normal is nice. I know you have again made sacrifices this year for our family situation, but I truly believe that will make you much stronger. Life lessons aren't always easy, but you always come out the other side with more knowledge and power. The one thing I hope this journey we are on has taught you is to do what you love always and never sacrifice your happiness for what others may say is the "right" way of doing things. There is no right way and life's to short and precious to fill the need to be equal to others. You will always be unique and that's what makes you who you are. I hope this past 18 months has taught you that family comes first. We are a tight family, the 4 of us, and it shall always be that way.
This past year, you have really taken your imagination to new levels, and I love how you are enjoying reading. Don't stop reading. It's the gateway to fantasy and only helps to mold your imagination more which always promises to make life more interesting. Thank you for trying new things. Never stop that. And I wish I could say this next year is going to be easier, but I can't. We never know what the future holds. But I'm certain with your kind heart, contagious laugh, and love for your sister, you will only come out even stronger and filled with life skills that others may not have at the ripe age of 7. Consider it a blessing and not a hindering. Happy birthday to the most handsome boy I know.
Love
Mommy (btw, the no kisses anymore have got to change! You are never to old to kiss your mother)
An adult and an ok mom. As long as they survive toddler hood, I think every parent should get a "hell yea, you didn't kill them" medal!! Lol you know the years they have no fear and try everything and stress the hell out of you!! Jack is long past that and turning out to be such a sweet boy. He still has a few issues, but I can't blame him for what he's gone through. I Dont know if you have seen parenthood with Steve Martin, but jack is like Kevin in that movie. He easily cries over things and stresses out about everything! Sometimes he gets overwhelmed and has a break down, and small things can overwhelm him. Just the excitement of his birthday had the poor kid stressed out and crying. Anyhow, here is a letter to Jack.
Dear Jack:
Wow!! I can't believe you are growing from a baby to a small person to a responsible kid right in front of my eyes. When I look into your eyes, I still
The baby that I had. Sometimes when you sleep I like to just stare at you. Yes, moms can be weird, you'll soon learn why. But to me, while you sleep, you still look like that tiny baby we brought home with us. I have loved watching you grow up, and with each year, your coming into your own even more. I find you to be a very funny little boy with a great laugh. Your laugh is contagious, and we have needed that over the last year.
You really did a wonderful job in first grade considering we had to fight you to go to kindergarten. You also had some rough moments to deal with over the last year, and you have done nothing but treat Lucy so nice during her hard days. Now her good days are a different story. You two would beat each other to a pulp if we let you. Which is normal. And normal is nice. I know you have again made sacrifices this year for our family situation, but I truly believe that will make you much stronger. Life lessons aren't always easy, but you always come out the other side with more knowledge and power. The one thing I hope this journey we are on has taught you is to do what you love always and never sacrifice your happiness for what others may say is the "right" way of doing things. There is no right way and life's to short and precious to fill the need to be equal to others. You will always be unique and that's what makes you who you are. I hope this past 18 months has taught you that family comes first. We are a tight family, the 4 of us, and it shall always be that way.
This past year, you have really taken your imagination to new levels, and I love how you are enjoying reading. Don't stop reading. It's the gateway to fantasy and only helps to mold your imagination more which always promises to make life more interesting. Thank you for trying new things. Never stop that. And I wish I could say this next year is going to be easier, but I can't. We never know what the future holds. But I'm certain with your kind heart, contagious laugh, and love for your sister, you will only come out even stronger and filled with life skills that others may not have at the ripe age of 7. Consider it a blessing and not a hindering. Happy birthday to the most handsome boy I know.
Love
Mommy (btw, the no kisses anymore have got to change! You are never to old to kiss your mother)
Tuesday, July 10, 2012
Everlasting gobstopper and lickable wall paper
Oh yes, we all know the words to Willy Wonka (the old version not the creepy Johnny Depp one). Lick the wall paper, the strawberries taste like steawberries, blueberries taste like blueberries, snozzberries taste like snozzberries. "snozzberry? Who has ever heard of a snozzberry?" Well, I have!! They label it under such names as Xanax, kolonopin, Zoloft, Wellbutrin, etc. And it's just for adults. Any adult, but those with children are probably more apt to take such things, and those with an ill child SHOULD take such things!
We have this discussion often in one of my cancer mom groups. Who takes what? Does it help? How do I get it? What do I say to the doctor? I don't want to tell them I'm crazy? Or will they think I'm crazy if I ask for it? These are all the questions, discussions, etc we have. And I have always had an answer for all of them.
I'm no longer afraid of what "people may think" or how they may label me. Coming from a family with a looong history of mental illness (I hate that term), I finally accepted my fate long before Lucy got sick. I fought it for years. As a teen, I chose eating disorders and OCD, as a young adult, I just charged through the manias and did a lot of damage along the way and spent a lot of time isolated during my fallouts. Well, after I had kids, I no longer had that option of nursing my illness back to "normal". And postpartum, it got worse. I'm classified as a mild bipolar 2. Basically I have periods of mania (highs where I have tons of energy and sometimes not the best judgement), and then I crash. I crash into a depression that hardly allows me to get out of bed. I quickly realize what damage I have done during a mania (committed to too much, spent too much money, ect). It takes much longer to get out of a depression.
I tried many drugs as soon as the depression would hit and then after it was over, I would stop taking medicine because it stifled my highs. And I loved my highs. I rationalized each time that I wouldn't let it get out of control. And at the time, I had no clue of my diagnosis, I was just going based on past events. And I refused to believe I had an illness at all. What a horrible label! Crazy! Ugh.
Then I had Jack. I had postpartum horrible. And I didn't recognize it. It wasn't the kind where I felt I may hurt my child, but the kind where I wouldn't leave the house. Zach noticed it first. So at my 6 week check up, I talked to my doctor, and was put on Zoloft. Wow!! What a difference after 2 weeks. Even I noticed it and felt it. And I liked it! I was truly happy and not speeding, like a mania. Well soon after Jack turned one, we decided to try for another child, so I went off of my Meds. And I also learned during that time, I had hypothyroidism. Depression is caused by hypothyroidism, specifically bipolar 2 (of course I don't know this at the time).
I got pregnant, had Lucy, and this time demanded zoloft as soon as she was popped out! I did NOT want to experience post partum again. And it worked! During the first year of Lucy's life, something happened. The drug no longer "helped". I wasn't in a deep depression, but I had no happy feelings either. I was just blah. I worked with my OB and even went to mayo where my thyroid condition was upped to hashimatos disease. We tried different medicines, and for a while, I was on a roller coaster ride. Then Lucy got sick. I couldn't stop crying. And of course, that was very normal. But Lucy hated it when I cried. So this time, I consulted an actual psychiatrist. We talked about my history, family history of both depression and hypothyroidism. And he prescribed me three different medications.
I was like "hey, I'm all for getting better, but I hate taking so much medicine, and I really want to be able to "feel"." I explained how I often would go off medication because it made me feel nothing and I missed my manias. He assured me, the cocktail he gave me would allow me to feel, but help me to manage my feelings. He also suggested I see a counselor. Ugh again! I'd tried the counselor route SEVERAL times and it always failed. But I knew with Lucy being sick, I had to have control over at least one thing. So I went through lots of counselors. And my doctor said, if you don't like them, find somebody new. What a concept??!!! I could fire a counselor??!! I had no idea. And that's what I did. I took the cocktail of medication, I began blogging, and I fired a lot of counselors until I found the "one". The one who, at first, I was skeptical. Then who I fell in love with. (not literally of course). He challenged me, he explained scientifically why I was bipolar 2, and he actually diagnosed it. Before then, I was just "depressed". He helped me to realize why I needed medication, how to get the most out of my medication, how to balance my hashimatos and my depression, and most importantly how to come to terms with reality. My daughter has cancer and it could possibly take her life. I was so mad when he made that statement. Now, I'm glad he made me realize it.
Between my liberal psychiatrist who believes that living through chemistry is not something to be ashamed of and it's about finding what's right for your body, life, and situation, and my counselor who helped to explain why am I am how I am, I have found the right snozzberry and ever lasting gobstopper. My world isn't all lickable wall paper (although it should be), nor is it a world filled with chocolate rivers and candy filled tea cups, it is for all intents and purposes close enough. I live in reality, but understand that every once in a while we all need to escape and may need the help of others or snozzberries. And snozzberries are very real in my world. At least they are now.
So when we have this discussion in my cancer mom's group. I'm the first to offer my story, opinion, and I never label anyone as depressed or crazy. I simply tell them they need their everlasting gobstopper or happy pill to help them get through life.
Now, if they ever made kolonopin or Xanax as wall paper, you'd better believe, I would have NO problem redecorating and licking the walls.....often!!!
We have this discussion often in one of my cancer mom groups. Who takes what? Does it help? How do I get it? What do I say to the doctor? I don't want to tell them I'm crazy? Or will they think I'm crazy if I ask for it? These are all the questions, discussions, etc we have. And I have always had an answer for all of them.
I'm no longer afraid of what "people may think" or how they may label me. Coming from a family with a looong history of mental illness (I hate that term), I finally accepted my fate long before Lucy got sick. I fought it for years. As a teen, I chose eating disorders and OCD, as a young adult, I just charged through the manias and did a lot of damage along the way and spent a lot of time isolated during my fallouts. Well, after I had kids, I no longer had that option of nursing my illness back to "normal". And postpartum, it got worse. I'm classified as a mild bipolar 2. Basically I have periods of mania (highs where I have tons of energy and sometimes not the best judgement), and then I crash. I crash into a depression that hardly allows me to get out of bed. I quickly realize what damage I have done during a mania (committed to too much, spent too much money, ect). It takes much longer to get out of a depression.
I tried many drugs as soon as the depression would hit and then after it was over, I would stop taking medicine because it stifled my highs. And I loved my highs. I rationalized each time that I wouldn't let it get out of control. And at the time, I had no clue of my diagnosis, I was just going based on past events. And I refused to believe I had an illness at all. What a horrible label! Crazy! Ugh.
Then I had Jack. I had postpartum horrible. And I didn't recognize it. It wasn't the kind where I felt I may hurt my child, but the kind where I wouldn't leave the house. Zach noticed it first. So at my 6 week check up, I talked to my doctor, and was put on Zoloft. Wow!! What a difference after 2 weeks. Even I noticed it and felt it. And I liked it! I was truly happy and not speeding, like a mania. Well soon after Jack turned one, we decided to try for another child, so I went off of my Meds. And I also learned during that time, I had hypothyroidism. Depression is caused by hypothyroidism, specifically bipolar 2 (of course I don't know this at the time).
I got pregnant, had Lucy, and this time demanded zoloft as soon as she was popped out! I did NOT want to experience post partum again. And it worked! During the first year of Lucy's life, something happened. The drug no longer "helped". I wasn't in a deep depression, but I had no happy feelings either. I was just blah. I worked with my OB and even went to mayo where my thyroid condition was upped to hashimatos disease. We tried different medicines, and for a while, I was on a roller coaster ride. Then Lucy got sick. I couldn't stop crying. And of course, that was very normal. But Lucy hated it when I cried. So this time, I consulted an actual psychiatrist. We talked about my history, family history of both depression and hypothyroidism. And he prescribed me three different medications.
I was like "hey, I'm all for getting better, but I hate taking so much medicine, and I really want to be able to "feel"." I explained how I often would go off medication because it made me feel nothing and I missed my manias. He assured me, the cocktail he gave me would allow me to feel, but help me to manage my feelings. He also suggested I see a counselor. Ugh again! I'd tried the counselor route SEVERAL times and it always failed. But I knew with Lucy being sick, I had to have control over at least one thing. So I went through lots of counselors. And my doctor said, if you don't like them, find somebody new. What a concept??!!! I could fire a counselor??!! I had no idea. And that's what I did. I took the cocktail of medication, I began blogging, and I fired a lot of counselors until I found the "one". The one who, at first, I was skeptical. Then who I fell in love with. (not literally of course). He challenged me, he explained scientifically why I was bipolar 2, and he actually diagnosed it. Before then, I was just "depressed". He helped me to realize why I needed medication, how to get the most out of my medication, how to balance my hashimatos and my depression, and most importantly how to come to terms with reality. My daughter has cancer and it could possibly take her life. I was so mad when he made that statement. Now, I'm glad he made me realize it.
Between my liberal psychiatrist who believes that living through chemistry is not something to be ashamed of and it's about finding what's right for your body, life, and situation, and my counselor who helped to explain why am I am how I am, I have found the right snozzberry and ever lasting gobstopper. My world isn't all lickable wall paper (although it should be), nor is it a world filled with chocolate rivers and candy filled tea cups, it is for all intents and purposes close enough. I live in reality, but understand that every once in a while we all need to escape and may need the help of others or snozzberries. And snozzberries are very real in my world. At least they are now.
So when we have this discussion in my cancer mom's group. I'm the first to offer my story, opinion, and I never label anyone as depressed or crazy. I simply tell them they need their everlasting gobstopper or happy pill to help them get through life.
Now, if they ever made kolonopin or Xanax as wall paper, you'd better believe, I would have NO problem redecorating and licking the walls.....often!!!
Tuesday, July 3, 2012
St. Jude Telethon
St. Jude Telethon
Check out this link..its how to donate to the telethon...and Lucy is in the picture too!! Got to Krogers as well and donate a dollar, Lucy and the other kids' pictures are on the donation slips ;)
Check out this link..its how to donate to the telethon...and Lucy is in the picture too!! Got to Krogers as well and donate a dollar, Lucy and the other kids' pictures are on the donation slips ;)
Sunday, July 1, 2012
Lucy singing a Hard days Night at the derby
http://www.youtube.com/watch?v=eLOhmacQIio&feature=youtube_gdata_player
Copy and paste and see her on YouTube.
Copy and paste and see her on YouTube.
Derby love
Ok so the McLean county MissFits have been a part of Lucy's journey for awhile. They are our local roller derby team. They have volunteered their time and resources for us. Now I know why they always post derby love after a bout! We finally made one last night in honor of team Lucy. And it was amazing.
First, we walk in the door and were greeted by giving each kid custom made t-shirts. They had a picture of the yellow submarine on the front (only in Missfits colors of green/black) and the MissFits logo was in the boat. On the back of Lucy's shirt, it said Team Lucy. And on the back of jacks shirt it said "super sib". Then they showed us to our seats. Which were amazing! They had a lazy boy set out for Lucy! Lol and soft chairs for us along with signs to help us root the team on.
The music was loud and the girls were skating and warming up and it was an awesome atmosphere. Their uniforms were individualized to their stage name and it was awesome to watch them.
Before the bout, Lucy and jack went over to the Glitter Fairy's table and got a couple of amazing tattoos. And the ladies there could not have been more wonderful with Lucy. She is now an expert glitter tattoo applier!! She was even telling people how long they last and how to remove them with baby oil.
During half time, they played musical chairs while also letting Lucy sing. I was surprised as she grabbed that microphone and walked in the middle of the floor and sang the entire song of "Help". She wasn't shy at all.
We were also presented with a HUGE check. This thing was two body lengths long. The kids loved it. And the event raised $500. Which we are so grateful for. For those who came and supported us, we plan on using that money for new brakes on the van. We just bought the van last year and he since put over 40,000 miles going to Peoria every week and our MANY travels to Memphis. We have already out new tires on it and now we need brakes and rotors (sp?) and we did NOT budget that in! So this was a wonderful gift and will cover the cost of
That. Thank you!!
And one more thing before I sign off. Zach had a gentleman come up to
Zach and asked what illness Lucy had because she didn't look sick. And Zach told him leukemia. He asked how she still had all her hair, etc. and I forget that not everybody following us today haven't been with us since day one. And it was a very good and legitimate question. Zach explained
We went through our high dose chemos last year and she did lose all her hair. And now we are in maintenance so the chemos are lower doses. That's the thing with leukemia that is so "hellish" it's a 2.5 year treatment plan. And people forget sometimes what we deal with on a fail basis because Lucy longer "looks" sick. And while she is on a lower dose of chemo and doing much better, we still struggle with steroid week, low counts and low immune system, the effects of chemo, the expense of traveling each week for treatment, and missing work for it. So I want to thank that gentleman for asking that question. It helped to remind us that just because people don't look sick, doesnt mean they are well. And it helped me to remind people that leukemia is a marathon not a sprint. And right now we are on mile 11.5. And we feel very privileged to have spent some of this mile with the Missfits!
They always raise money for charities at every bout, so go out and see tem and I bet you'll have derby love too!
First, we walk in the door and were greeted by giving each kid custom made t-shirts. They had a picture of the yellow submarine on the front (only in Missfits colors of green/black) and the MissFits logo was in the boat. On the back of Lucy's shirt, it said Team Lucy. And on the back of jacks shirt it said "super sib". Then they showed us to our seats. Which were amazing! They had a lazy boy set out for Lucy! Lol and soft chairs for us along with signs to help us root the team on.
The music was loud and the girls were skating and warming up and it was an awesome atmosphere. Their uniforms were individualized to their stage name and it was awesome to watch them.
Before the bout, Lucy and jack went over to the Glitter Fairy's table and got a couple of amazing tattoos. And the ladies there could not have been more wonderful with Lucy. She is now an expert glitter tattoo applier!! She was even telling people how long they last and how to remove them with baby oil.
During half time, they played musical chairs while also letting Lucy sing. I was surprised as she grabbed that microphone and walked in the middle of the floor and sang the entire song of "Help". She wasn't shy at all.
We were also presented with a HUGE check. This thing was two body lengths long. The kids loved it. And the event raised $500. Which we are so grateful for. For those who came and supported us, we plan on using that money for new brakes on the van. We just bought the van last year and he since put over 40,000 miles going to Peoria every week and our MANY travels to Memphis. We have already out new tires on it and now we need brakes and rotors (sp?) and we did NOT budget that in! So this was a wonderful gift and will cover the cost of
That. Thank you!!
And one more thing before I sign off. Zach had a gentleman come up to
Zach and asked what illness Lucy had because she didn't look sick. And Zach told him leukemia. He asked how she still had all her hair, etc. and I forget that not everybody following us today haven't been with us since day one. And it was a very good and legitimate question. Zach explained
We went through our high dose chemos last year and she did lose all her hair. And now we are in maintenance so the chemos are lower doses. That's the thing with leukemia that is so "hellish" it's a 2.5 year treatment plan. And people forget sometimes what we deal with on a fail basis because Lucy longer "looks" sick. And while she is on a lower dose of chemo and doing much better, we still struggle with steroid week, low counts and low immune system, the effects of chemo, the expense of traveling each week for treatment, and missing work for it. So I want to thank that gentleman for asking that question. It helped to remind us that just because people don't look sick, doesnt mean they are well. And it helped me to remind people that leukemia is a marathon not a sprint. And right now we are on mile 11.5. And we feel very privileged to have spent some of this mile with the Missfits!
They always raise money for charities at every bout, so go out and see tem and I bet you'll have derby love too!
Saturday, June 30, 2012
Are you ready to rumble!!!! (in my loudest echo voice ever)
Yes, it's dex week.....again!! So far we have had some pretty impressive fits, but more than anything we have had pain. And while Lucy is going through the physical pain, dad and I go though the emotional pain of watching her like this. I hope as they improve upon the protocol, they figure out a way to use less steroids. We always thought the pain she had during dex was associated with the chemo vincristine because it is known to cause neuropathy. And it sure has messed up her legs. But with Zach on steroids as well, he keeps saying how much his body hurts. So we decided on day 3 of steroids to start giving codeine every 6 hrs. It has really seemed to make a difference so far and we see a lot more of Mary! Ha!
So I have some fantastic news: I called Memphis to see how Lucy's spinal was since the last few have been shit. And it's clear!!! For the first time in a long time!! Woo hoo. Usually she has something suspicious that they have to test and while it's never been cancerous, it's still a long 3 days waiting to see if it is! And this time it's all clear from the beginning! What a huge sigh of relief. More exciting news: we got our next to last roadmap for treatment!! Basically the roadmap lays out our treatment week by week. Her next dose of dex at the end of July IRS to 4mg per day instead of 6, small step, but we will take it. We don't go back to Memphis until October! And then her very last spinal is in march as is her last dose of dex and vincristine!! Woo hoo!! Then we ride out the last 20 weeks of treatment with IV methotrexate weekly and 6MP every night. I cannot believe how far we have come. And you can never plan with cancer, with the exception of road maps!! That's why I love when we get new ones.
So this week has been a good week. And I'll take it. We need them every now and again to remind us how lucky we are. Lucy may have cancer, daddy may be on steroids, Taco may be on steroids and sick, but they are all here to hug and love an rumble with if need be. And for that, I'm thankful.
So I have some fantastic news: I called Memphis to see how Lucy's spinal was since the last few have been shit. And it's clear!!! For the first time in a long time!! Woo hoo. Usually she has something suspicious that they have to test and while it's never been cancerous, it's still a long 3 days waiting to see if it is! And this time it's all clear from the beginning! What a huge sigh of relief. More exciting news: we got our next to last roadmap for treatment!! Basically the roadmap lays out our treatment week by week. Her next dose of dex at the end of July IRS to 4mg per day instead of 6, small step, but we will take it. We don't go back to Memphis until October! And then her very last spinal is in march as is her last dose of dex and vincristine!! Woo hoo!! Then we ride out the last 20 weeks of treatment with IV methotrexate weekly and 6MP every night. I cannot believe how far we have come. And you can never plan with cancer, with the exception of road maps!! That's why I love when we get new ones.
So this week has been a good week. And I'll take it. We need them every now and again to remind us how lucky we are. Lucy may have cancer, daddy may be on steroids, Taco may be on steroids and sick, but they are all here to hug and love an rumble with if need be. And for that, I'm thankful.
Subscribe to:
Posts (Atom)