Saturday, April 5, 2014

learning as i go.

every single time i am at the hospital, i learn something new. we have lived in ICU. we have lived on the oncology floor. we have had uneventful chemo stays. we've also had anything from a 99 fever to septic shock, with some sort of brain infection in between. i have cried to nurses, to oncologists, and to doctors i don't even know. things change all the time while we are living within a structured protocol. so while i am not an expert, while we are not done, i have a few things i would want to say to the me of halloween 2012. and to those whose date is more recent.

1. it's okay. it won't seem as scary, soon.
2. you will start to understand medical terminology very quickly. pay attention and listen close.
3. ask questions. to anyone. about anything you don't understand.
4. ask "what are you doing now?" if you want to stay up on the meds and things your child is getting. you are not annoying. you are learning.
5. start a journal or blog. get a planner. carry it around and write everything down. you are going to want to remember dates and times later.
6. get a rubbermaid bin or something similar for home for their "things". paperwork you want to keep, cards from friends, deflated balloons, clothes they wore on a certain day... its a shitty memory box to have to keep, but you will be glad you have it.
7. google is your friend and enemy. remember that statistics aren't meant for moms perusing the internet. your child is not a statistic. and someone has to beat all odds, right? but i think its important to learn about clinical trials, things other hospitals are doing, etc. even if all you do is bookmark that information. knowledge is always power.
8. let people help you. you have to let go just a bit, no matter how hard it is. let people bring you dinner or help you with your other kids. if you are a friend reading this, don't ask "how can i help?" - just do what you think your friend would like. wanna cook? just drop it off to them. its hard for people who only relied on themselves to now need to rely on others and to ask.
9. remember that whatever people say, they are saying it because they love you - even if its not "the right" thing to say. no one means to hurt your feelings. sometimes people just don't know what to say, but they are trying... give them some grace. people are also going to give you every piece of advice they have ever heard on the topic. some of it is helpful and awesome. some of it may not be your style. some of it may be things you've heard a million times. just know that people feel compelled to help you in some way - and this is their way. say thank you.
10. be nice at the hospital. make friends with nurses. they will be your best friends and can be extremely helpful when you are confused, are having problems with residents, or just need someone to understand.
11. do not ever hesitate to speak up. if you are uncomfortable with something - say it. someone can explain to you the why. if they can't, then maybe it's a good thing you spoke up.
12. you won't always cry. you will cry sometimes. thats par for the course. but talking about it won't make you cry as much or as often. life will be filled with more facts and less uncertainty. that will help. even if the facts aren't always happy ones.
13. chemotherapy is extremely uneventful. i expected some grandiose thing. it is not. it just... is. i remember taking photos of the first chemo - nothing more than an another IV drip. that sometimes ends the night in puke. get some zofran. and possible ativan. you'll figure it out.
14. also, the word "chemotherapy" sounds scary. and it can be, but remember its job. i webMD'd types of chemo once. some come from plants. some are manufactured by people with hazmat suits in a lab, but each has a job. and if your child needs it - remember to classify it in your brain as a "helper". so are steroids. even if they make your child hulk-smash things. it has a job.
15. you will mourn your child's hair loss. then again, at the end, you will mourn their bald head. i said a few posts back, try not to look at their head as a sign that they are sick, but as a sign that they are getting better. its a battle wound, only. their hair will come back. but for some people (like us), you've had a smooth noggin for so long - that its all you remember.
16. in the beginning, don't forget to shower. and sleep. and go home, sometimes. you need those things for sanity. it is not selfish. you need to be on top of your game when you are with your child and doing "normal" things, helps that process.
17. your new normal will stop being called "new" and start being called "normal".  just give it time. it will come faster than you thought it would.
18. being on chemo doesn't mean you are locked in your  home, for most. there are high/regular count days and low count days. you will have labs to know for sure.
19. it is okay to laugh. make jokes with nurses and doctors. talk about other things with them. let them get to know you and your family. it is okay to feel happy.
20. you can't live in worry all of the time. you are only guaranteed this exact moment. the last thing you want to feel is that you wasted months of your life worrying about things that you cannot change.
21. plan things. plan fun things for tomorrow, for months from now, for the future. the latter is hard. very hard.  let some time pass before you do that, if you need to.
22. give yourself some grace. its okay if you didn't do the dishes because you were running around to appointments all day. it is okay if your husband had no clean underwear because you had to run the washer again after forgetting to swap it. ask a friend to help, hire a maid to come every once in a while. its okay if you can't do it all.
23. remember that your husband or other family members may deal with all of this differently than you. don't judge anyone else for how they survive the new normal. and friends, remember that about us, also.
24. don't overpack at the hospital - you are going to somehow leave with more stuff than when you came and its a pain in the ass to take to the car.
25. have a backpack with necessities ready in case of middle of the night fevers. its annoying to be searching for favorite PJs at 3am when you need to leave.
26. your child will adapt. its heartbreaking to watch your child go through such horrible things at any age, but children will adapt to whats going on and rock it out. they are much stronger than we are. super heroes, indeed.
27. ports are awesome. really. tap in, give meds, tap out. no IVs 98% of the time and with the numbing cream - they really don't feel it. you can even give some meds at home with that thing. its useful.
28. this may be only my opinion, but let your other kids in on some of the medical things. sometimes its less scary when they can just talk to you about "the tumor in her head" or "her port being accessed" or "how the medicine gets in" as opposed to "your sister is sick". i would never want them to think that being sick means any of this.
29. people will want to hug you. lucky for me, i'm a hugger. if you are not, you had better get over it because people, sometimes even strangers, will want to hug you. it is one of my favorite parts :)
30. hospital food is not that bad. and some of it is really good. you just have to figure that part out ;) also, find out how to get food cards (cheaper than eating in the cafeteria), if they have them. food is a very expensive part of it all. its easier to eat out because you are so busy. and the hospital food is NOT cheap.
31. find out who your social worker is. they may come to visit you, maybe not. but they can be a huge asset to navigating almost any part of your medical journey. they are who you need when you need signatures for things, for finding out answers about insurance, for getting information on events - most anything. she will do the chasing down of information and it is a life saver.
32. child life can make any day better. you need an extra blanket? they have an adorable one. your kid is bored? i bet they have 20394823 fun things to do. they also know about all of the upcoming events. they are ready to help - so don't forget they are there!
33. be ready for questions. sometimes from people who are just curious, sometimes from people who have felt a need to talk to you, sometimes from children who want to know the deal with the bald headed kid. it will eventually be nice to answer these questions. almost cathartic.
34. people want to pray for you. even if you, personally, aren't religious. people want to give you "good vibes", even if you are wishing they'd simply pray. accept all types of love and support with a warm and open heart.
35. try not to correct everyone's [lack of] medical knowledge. sometimes, i am bad about this, but i try to reel it in.
36. you won't sleep a lot leading up to MRIs or PET scans or whatever you do to check up on your child. when i first hear the word scanxiety, i laughed, knowing how spot on that was.
37. you may invent up every single thing being off or wrong or bad in the days leading up to the scan. its just the way it goes.
38. because sometimes you are neurotic. and that is okay. join the club.
39. you know your child best - and the doctors will agree with that. so never ever hesitate to mention something. i have pushed. i have mentioned ridiculous things. i have cried in the clinic rooms about random things. but i have also witnessed small changes that were indicators of BIG illness later - and only i, as the person with my child the most, could relay that information.
40. you will mess up. your child's counts will drop early and you will have sent them to school that day. you'll forget an appointment because you didn't write it down. whatever it is, refer to #22.
41. when you finally figure something out, it may change. go with it.
42. learn to live life in the flow. those plans you had this wkend? out because of fever. that sleep you wanted tonight? gone because of a puking kid.
43. but they are here. and thats better than those plans. or that sleep. every middle of the night chat session puts the sleep i thought i needed to a test. and i wouldnt give up one.
44. celebrate small victories. anything. a stable MRI, end of chemo. just going home after a long hospital stay. you'll find your own.
45. find an outlet to vent. maybe you blog like me, maybe you find a therapist. finding online groups for your child's dx can be helpful as well. just whatever helps you feel as if some of the weight of it all is lifted, even for a moment.
46. some of the people you thought would never leave you - do. some people will not be able to handle your life. also, some people will be there, so strongly, up front and then wither out of your life when things get more stable. but there will be those who you never thought would be your best friends, stand up and end up closer to you than anyone else. cherish them. their support will keep you afloat some days.
47. remember that everyone's journey is different. some end in celebration. some in heartbreak. some have mountains along the way, some have valleys. do not compare yourself to their cancer. their tumor. their diagnosis. that is not your child. this is important to remember when you read other blogs or follow facebook pages - it can be overwhelming. do not feel guilty for needing to take a step back, either. but we all meet in the middle. somewhere between fear and love sits all parents fighting a battle for health with their kids.
48. but you will get through it. and then at the end of treatment you'll be just as scared as you were day one. but this time, it is new fear.
49. the fear, will likely, never go away. i am not that far past those who i am trying to help and write this for, but i know for certain that i will never stop worrying. or randomly crying. or texting friends who "get it" to talk to me off the crazy town train. but what i do know is that i am still okay. we are all still okay. and that before our journey began, i thought i would never be able to be that strong. to be that mom. for us to be that family. but we are. 
50. and you are. and you can do it. because you have to. and that is reason enough.

if you have more things you'd want newly dx parents to know - please add it in the comments.

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  1. Amanda, That is an AMAZING blog!! I am sorry that you had to write it, for the reasons you had to write it, but it is incredible and needs to be published and given to every single cancer "family". PLEASE do that! It could help so many families navigate the process and teach them to be gentle with themselves. You are freakin awesome!!

  2. BINGO!! Nicely said and so very true!

    Teresa Brandsrud

  3. really true. i do think this thiings are all true and good to know foor ne parents in the cancer world

  4. This made me openly weep. The understanding and "Yep, that's exactly right-ness!" of it all. ALL of it. Thank you for writing this. It reminds me that we aren't alone int his fight. Thank you, and I wish you , your family and all of us families going through this the very best!! xoxo

  5. As usual, your blog chokes me up...brings me to tears. Your strength never ceases to amaze me, you are truly an inspiration. I swear you must have a clone because I just don't know how you do it!!

  6. I would have LOVED to read your post when my daughter was diagnosed in 2007. She earned her wings in August of 2009. Never stop fighting!!

  7. This is such an amazing post. It made me cry! I hope I never have to experience anything like this but wow, what great information and suggestions to those who live this! Amazing!

  8. #24! and so many others. I was laughing, crying, and sighing. Yes. It's all accurate, it's all so overwhelming at first. I was just remembering the week of our diagnosis, and how I thought 'I'll never understand what these doctor's are saying, how do they expect me to keep up!?' And now I do, and I still don't exactly know how. <3

  9. Thank you so much for putting all those hours spent in a place you wish you didn't have
    to be. Thinking of how to help others. When you enter this new world you are dazed, confused, and numb. I wish I had a list like this when we entered our journey with our 16 year old son. He went to heaven on sept.15 2013. Blessings to you and your precious child.

    1. i am so sorry, terrie :( praying for you and yours.

      and thank you.