Yesterday was a super emotional day for me. Man by bedtime, I was so spent and emotionally drained, I can honestly say that hasn't happened in a long time. And it had everything to with cancer. FU Cancer. Jack has obviously had some issues with this whole "my sister has cancer and cancer sometimes makes people die" thing. Yes, its a "Thing". Because while we firmly believe that will NOT be the case with Lucy, it still lingers in his 7 year old mind. And he acts out from time to time. The boy has a temper (like his father) and lots of pent up anger and no where to take it. We have him in counseling. We have put him in lots of camps this summer to keep him busy, occupied, and most of all let him get his energy out. We also make sure we spend 1x1 time with every Wednesday while Lucy is at clinic. Zach and Jack days consist of Star Wars movies. Jack and I time consists of board games or science experiments.
Well, he still has a big temper and lots of anger despite our best efforts. We have taken him for all sorts of testing for ADHD, behavioral issues, mild spectrum autism, you name it. The psychiatrist basically said "he is a very intelligent little boy who is surrounded with a lot of stress and his world is turned upside down now and has been for the last 18 months. He also has this notion that he does what Jack wants to do, period". We tried behavior charts, reward charts, cleared his room of all but a bed and clothes. He even doesn't have video games anymore. That's how far we took it. We also have added special time just for him. Well, he still has meltdowns, and they are getting worse, and he is getting stronger. We asked his psychiatrist what we should do. His answer and the answer of other counselors. When he gets violent and is hitting, you can put him in a hold (we even had to practice the hold in the office), and if that doesn't help, you need to call the police. I was like "WHAT?" I most certainly will NOT call the police on my 7 year old. Well, I ate those words last night :(
He was totally out of control. Breaking everything in site, hitting Lucy several times (which is absolutely unacceptable. If she wasn't sick, it'd be a different story), and punching and biting Zach. He even left marks :( So I did it. I called the police.
It took a couple of hours, but the county sent out an officer. They were reluctant as they said there isn't much they can do with a 7 year old. We were only asking for a frank discussion about what path he is heading down if he doesn't make choices to exploit his anger in a different way. BTW, what got him so mad? He had to take turns watching tv shows with Lucy. That was it.
The officer comes out, and Zach and I go out to talk to him. He kept asking "What medications is he on, what has he been diagnosed with, and has he had any testing?" We kept telling them none, and no, and even explained how far we have gone to help this issue. He didn't believe us, we could tell. We told him, he was genuinely a good kid, with a world that has been turned upside down. He asked what we wanted from him. We told him we were acting on the advise of our counselor. We have explained to Jack what will happen if he ever hits somebody in public, and we don't think he believed us. We wanted a third party to explain it to him. I could tell the officer was skeptical. As if I didn't feel bad enough for making the call, now he made me feel like an idiot. And I know it wasn't intentional. I think he thought we were parents who didn't want to have to parent and were pushing it off on someone else.
After a discussion outside, he came inside to talk to Jack. And all I can say is Jack was such a little man. He looked the officer in the eyes, his chin quivered while the officer explained what would happen if this continued. It absolutely broke my heart and I almost broke down and bawled. The officer told him that we said he was a good and smart kid, but that he was called because of his temper and violent tendencies, and then he proceeded to show him what would happen if he didn't find another outlet for his behavior. Jack was shown the handcuffs, the taser, the car. Even explained about juvenile detention and foster homes. The officer said he didn't think Jack belonged there as we didn't either, but there had to be something done about him destroying things, and hurting people. This was quite possibly the second worst day of my life. First being Lucy's diagnosis day.
After the officer left we talked to Jack about how he was there to protect us because Jack was hurting us and Lucy, and that if somebody was hurting Jack, he would be right there to protect him as well. We don't want him to fear the police always, we want him to understand their role. We had a good discussion after he left. I was so proud that he didn't cry and he was very respectful, which also made me feel horrible for having to do that. We also scheduled a follow up with his counselor so he could talk more freely about it without us there.
I still don't know if we made the right decision. But yesterday was horrible. I was in tears because he was hurting everyone and throwing everything in sight. He broke his door off the hinges, and kicked the door frame out. He was out of control. And we weren't even yelling while trying to calm him down. I still think we need to find a way to help him cope with his anger and let it out, we are still working on what that "thing" is.
So while this isn't my most proud moment as a mother nor do I feel good about what we had to do, I want people to know how much this horrible disease affects the entire family. And for those people who still ask us "you mean you are still in treatment? or You are sailing now. or You should be able to go on normal" I wanted to give you a taste of what its like in our house sometimes. Its sad. Very sad. I am helpless with Lucy's treatment in that I can't control her disease, and last night I felt helpless in helping my son with his own issues. And another note, I think the officer was shocked when he walked into our home and saw how "normal" we were. I don't know what he expected, but I guarantee it wasn't what he saw. And he even made the comment that Jack made eye contact the entire time and was respectful. That's why it makes me mad when the first thing people say is "he has behavioral issues and needs medication". NO!! He is a young boy whose life has been turned upside down by this horrible disease as has the rest of our lives. If we as parents have a hard time coping, I can't imagine how he feels. Yes, Kids are resilient and are better with change, but the effects last a life time.
Before I end this post, I want to let you know that I didn't write this for advice, or need any information about parenting, nor any unsolicited judgement about what we did. We took the advice of our counselor (two of them actually). We have gone above and beyond and still are working hard with Jack. I wrote this so people can see what some days look like in my home. This is the reality. This is the face of Childhood cancer. And its heart wrenching, horrible, and sucks. Period!
Tuesday, July 31, 2012
Thursday, July 26, 2012
Pass the "hanitizer" so I can eat some "popcorm" Please
One of the things that I absolutely love about my children is when they have their own phrases for ordinary things in life. We often call them Lucyisms, but as we realized that Lucy is starting to use the correct terminology on things (and it is breaking our heart), we were remembering the things that Jack used to say too.
Jack used to say "harbage" for garbage, and when talking about the cafeteria at school (daycare) it was the "crapeteria", and the one that stuck around for the latest was "temote" for remote. We even would start saying these same things instead of the regular words, and we didn't want people to correct him because it was "his" thing. As he got older, these phrases went away, but we never thought much of it because we had Lucy who was beginning to talk, and she had her "own" words. Well, now its becoming a very very sad time. Lucy is no longer using lucyisms, and its breaking our hearts. Zach has even commented on it. Now I understand why everybody says to cherish these moments because they grow up so fast.
Lucy use to say diary when she met diarrhea, or most recently she asked for biscuits and gravy instead of "graby". The graby one really tugged on our heart strings. I know there are a lot of things that signify that our kids are growing up, like heading off to kindergarten, not needing help with breakfast or the tv remote, or my most favorite...they can finally wipe their own butt!! And we are so happy about these milestones, but for some reason, the language is really a sad thing.
At least there are a few Lucyisms that are still lingering, and I really hope nobody corrects her. It will be almost as sad as the day they finally ask about Santa. For Now Lucy is still needs to "refreshen" up to get ready, and be sure he uses hanitizer so she can eat some popcorm, and then she hopes she won't get a tummy egg from it all ;)
Jack used to say "harbage" for garbage, and when talking about the cafeteria at school (daycare) it was the "crapeteria", and the one that stuck around for the latest was "temote" for remote. We even would start saying these same things instead of the regular words, and we didn't want people to correct him because it was "his" thing. As he got older, these phrases went away, but we never thought much of it because we had Lucy who was beginning to talk, and she had her "own" words. Well, now its becoming a very very sad time. Lucy is no longer using lucyisms, and its breaking our hearts. Zach has even commented on it. Now I understand why everybody says to cherish these moments because they grow up so fast.
Lucy use to say diary when she met diarrhea, or most recently she asked for biscuits and gravy instead of "graby". The graby one really tugged on our heart strings. I know there are a lot of things that signify that our kids are growing up, like heading off to kindergarten, not needing help with breakfast or the tv remote, or my most favorite...they can finally wipe their own butt!! And we are so happy about these milestones, but for some reason, the language is really a sad thing.
At least there are a few Lucyisms that are still lingering, and I really hope nobody corrects her. It will be almost as sad as the day they finally ask about Santa. For Now Lucy is still needs to "refreshen" up to get ready, and be sure he uses hanitizer so she can eat some popcorm, and then she hopes she won't get a tummy egg from it all ;)
Tonight Tonight...Tonight's the Night
I am having a fundraiser for St. Jude tonight at Gil Street bar starting at 5 pm and its open house style. 25% of all proceeds go towards my run in December (and I still need to raise $1700!). Its a great month for specials too! Come by and get some great things while supporting St. Jude. If you can't make it, you can order online until Saturday evening. Thank you ;)
http://www.mythirtyone.com/lindseyhale/
Click on My parties, then find Shawna Weber fundraiser and shop away! Make sure you check out the specials, the best of the year in my opinion!
http://www.mythirtyone.com/lindseyhale/
Click on My parties, then find Shawna Weber fundraiser and shop away! Make sure you check out the specials, the best of the year in my opinion!
Tuesday, July 24, 2012
Taco update
We took Taco back to the vet today for his check up after being on steroids for 30 days. His counts are all normal. And before you say "yea", let me explain this to you. The steroids are basically "boosting" his immune system. They are pushing things out of his bone marrow very quickly, so his numbers should not be normal. They should be WAY elevated. So this wasn't the bed news we wanted. The doctor said is definitely 1 of 2 things as before. Autoimmune disease, or Cancer. Specifically blood cancer. We won't know unless we do a bone aspirate, which we have chosen not to do. So the game plan is to wean him off steroids over the next 6 weeks. The doctor said if we weaned him too fast, and it is cancer, he would go downhill really fast and be in a lot of pain. So after the 6 week weaning, we will recheck his counts at that time, unless of course something happens prior to that. We are really saddened by this news, but at least we have prolonged his life, and he is in no pain. He is fat though! lol He weighs 24 lbs and should only weigh around 15. So while weaning him, we have a very strict diet for him to follow too, and some interesting ideas from the doc for exercise. So we will know in the next few weeks if we are dealing with an autoimmune or cancer, and how to proceed from there. Until then, its snuggles snuggles and more snuggles for my favorite Weiner dog.
Monday, July 23, 2012
Teletastic!
This weekend was a very long, emotional, and rewarding week for our family and many other St. Jude families out there. It was telethon day. It's a day where the runners who started at Memphis come into the telethon, its a day where runners from all over central Illinois come together to run and raise money for the children of St. Jude. Its a day where people volunteer and get on the phones to take pledges for children who are fighting cancer, for research, and for a cure. It is an amazing day. And if you have never participated, I challenge you to do so next year. It will be the most amazing experience of your life. It amazes me how many people each year participate, and how those numbers keep growing, and how the 7 million dollars raised will help to run St. Jude for 4 days. Back in the 70's, the numbers were few and far between of volunteers for several reasons. 1. it was new 2. childhood cancer was (some still say is) rare 3. who wants to think about a child having cancer and participate in that event? It brings up fears in people that some don't want to deal with. But I submit that the reason that the telethon has grown and the runners have gotten to be more and more is because childhood cancer is in fact NOT rare. More and more people know a child or family suffering from a horrible disease. And it inspires them. I submit that its growing because awareness about child hood cancer is also becoming more prevalent. It is these two things together that will help to raise money to find cures for the many different cancers that children suffer. Awareness = funding = research = cure. Simple as that.
I remember as a child and when I watched "Terms of Endearment" for the very first time. Breast cancer and cancer itself was a nasty word. It was a word spoken in back rooms behind closed doors. People died in hospitals and had little to no hope a lot of the time. Well, what happened to that philosophy? Susan G Komen happened. She was courageous enough to get out there and speak about her sister. She wanted breast cancer to be the forefront and see that it didn't just effect women, but the entire family. She branded breast cancer. And you know what, I applaud her for that. Because of that, pink is all over. Funding has grown, cure rates are higher, and everybody knows what Race for the Cure means. That is exactly what I feel needs to happen with childhood cancer. We need to acknowledge it, see it, show it, be aware of it and stop hiding from it. It doesn't have to be this sad horrible thing that turns people away. It can be this inspirational event that shows people that cures and miracles can happen. But until there is awareness, there can be no funding, and that means less research, and lower cure rates. That is why I love the telethon and why its so emotional for me. It is raising that awareness and those people running in that heat are doing so for my daughter and the many other children out there. And each year it grows because each year more and more kids are getting cancer, so the friend of a friend theory no longer applies.
It was a very emotional day for me. The flyers in the RV's for the runners were amazing. The life size posters I saw when I walked into Central Catholic of all the children (Lucy included) was breath taking. And all the people that came to volunteer or show their support brought tears to my eyes. I only hope next year I see many many more people out at the school to show their support. Let's brand the Gold. Gold is Childhood awareness. Let's give it the attention it deserves and go big and bring in dollars that help to save more children's lives. September is Childhood Cancer awareness month. What will you do to show your support and spread the word? This was one poster in the flyers of the RV's. It says "Hard things take time to do. Miracles take a little longer". I cannot look at this picture of my beautiful miracle without still crying. Thank you to all the runners, supporters, and volunteers who made the Telethon a huge success. Much love, the Webers
I remember as a child and when I watched "Terms of Endearment" for the very first time. Breast cancer and cancer itself was a nasty word. It was a word spoken in back rooms behind closed doors. People died in hospitals and had little to no hope a lot of the time. Well, what happened to that philosophy? Susan G Komen happened. She was courageous enough to get out there and speak about her sister. She wanted breast cancer to be the forefront and see that it didn't just effect women, but the entire family. She branded breast cancer. And you know what, I applaud her for that. Because of that, pink is all over. Funding has grown, cure rates are higher, and everybody knows what Race for the Cure means. That is exactly what I feel needs to happen with childhood cancer. We need to acknowledge it, see it, show it, be aware of it and stop hiding from it. It doesn't have to be this sad horrible thing that turns people away. It can be this inspirational event that shows people that cures and miracles can happen. But until there is awareness, there can be no funding, and that means less research, and lower cure rates. That is why I love the telethon and why its so emotional for me. It is raising that awareness and those people running in that heat are doing so for my daughter and the many other children out there. And each year it grows because each year more and more kids are getting cancer, so the friend of a friend theory no longer applies.
It was a very emotional day for me. The flyers in the RV's for the runners were amazing. The life size posters I saw when I walked into Central Catholic of all the children (Lucy included) was breath taking. And all the people that came to volunteer or show their support brought tears to my eyes. I only hope next year I see many many more people out at the school to show their support. Let's brand the Gold. Gold is Childhood awareness. Let's give it the attention it deserves and go big and bring in dollars that help to save more children's lives. September is Childhood Cancer awareness month. What will you do to show your support and spread the word? This was one poster in the flyers of the RV's. It says "Hard things take time to do. Miracles take a little longer". I cannot look at this picture of my beautiful miracle without still crying. Thank you to all the runners, supporters, and volunteers who made the Telethon a huge success. Much love, the Webers
Sunday, July 22, 2012
I'll love you forever, I'll like you for always...
As long as I'm living my baby you'll be. Familiar with the book? If not, the premise basically follows a mother taking care of her baby boy and she always says this to him before bed. Then when he moves out, she sneaks in the window of his home and says it to him. Then the mom gets too old, so the son rocks his old age mother and says this to her. The book ends with the son grown up and has a child and keeps the tradition. So what does that have to do with this blog post? Very little. The part I want to highlight out of all of that is when the boy grows up and takes care of his mother.
Zach and I have conversations often about when we get old and how we think it will look. We had such a conversation today. We already told the kids if they put us in a nursing home, we would haunt them terribly after we died, so that's not an option! Ha!! So we decided we will be living with the children. I told zach, I'm going to hide all of their stuff under my pillow when I get old. He said he's going to ask for something to eat every ten minutes and then end up throwing it away. I said I was going to randomly leave the house and maybe sometimes take their car other times walk and not It tell them I'm leaving. Oh and when I go to the bathroom, I'm going to scream "I neeeeed someone to wipe my butt!!!!!" over and over.
We also decided we would join all sorts of senior groups and have then drive us and maybe even throw a fit or two about not wanting to go.
We said the child that gives us the most grief in all their years (which we are betting is Lucy) will be the one we live with and the other we will ask for money from. Now before you criticize us, think about it. How much better behaved would you have been growing up if you knew in advance how hard parenting was? And since that's not a reality, this could totally be a viable option.
Zach said he never "got" his mom til he had kids. And I never realized I needed to apologize to my parents until I had kids. And the irony, I really needed my mom after I had jack more than ever before.
Now I know it's my duty as a parent to withstand all the kids bring on, and that perhaps when they have children, they will get paid back ten fold (I know I am with Lucy. She is me x10), but it gives us great pleasure and entertainment to discuss how we will be towards the kids when they get older.
I love the title and premise of the book, it gives me goosebumps, but of it were more in line with the new version of "go the F&#* to sleep", it would be called "I'll love you forever, I'll like you sometimes, as long as I'm living, you will promise to wipe my butt"
Zach and I have conversations often about when we get old and how we think it will look. We had such a conversation today. We already told the kids if they put us in a nursing home, we would haunt them terribly after we died, so that's not an option! Ha!! So we decided we will be living with the children. I told zach, I'm going to hide all of their stuff under my pillow when I get old. He said he's going to ask for something to eat every ten minutes and then end up throwing it away. I said I was going to randomly leave the house and maybe sometimes take their car other times walk and not It tell them I'm leaving. Oh and when I go to the bathroom, I'm going to scream "I neeeeed someone to wipe my butt!!!!!" over and over.
We also decided we would join all sorts of senior groups and have then drive us and maybe even throw a fit or two about not wanting to go.
We said the child that gives us the most grief in all their years (which we are betting is Lucy) will be the one we live with and the other we will ask for money from. Now before you criticize us, think about it. How much better behaved would you have been growing up if you knew in advance how hard parenting was? And since that's not a reality, this could totally be a viable option.
Zach said he never "got" his mom til he had kids. And I never realized I needed to apologize to my parents until I had kids. And the irony, I really needed my mom after I had jack more than ever before.
Now I know it's my duty as a parent to withstand all the kids bring on, and that perhaps when they have children, they will get paid back ten fold (I know I am with Lucy. She is me x10), but it gives us great pleasure and entertainment to discuss how we will be towards the kids when they get older.
I love the title and premise of the book, it gives me goosebumps, but of it were more in line with the new version of "go the F&#* to sleep", it would be called "I'll love you forever, I'll like you sometimes, as long as I'm living, you will promise to wipe my butt"
Friday, July 20, 2012
Life as a SAHWCM
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! ;)
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! ;)
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!
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