Comments for Reflections of The Heart

Comment on State Journal Register Article by Sunday Scribblings: Interview « Pages of Unknown

Sunday Scribblings: Interview « Pages of Unknown — Sun, 08 Nov 2009 07:21:19 +0000

[...] Last year my sister found out she had a very aggressive form of stage III cancer: synovial sarcoma. By the time they accurrately diagnosed the tumor in her right thigh it was large and deep seeded. In order to save her leg they would need to do as much chemo and radiation PRE-Surgery as they would post surgery. The location of the tumor combined with heavy duty meds necessary to kill the abomination growing in her made it necessary to have a full time care-giver, so neither she nor my mother were able to work for most of 2008 and 2009. Because of this it was necessary to have a benefit to try to raise money for simple support such as paying their rent, electricity, transportation to and from doctors appointments and the hospital, food, etc. While prepping for the benefit we were lucky enough to get some publicity from a local journalist wh… [...]

Comment on April WOW by Harriett Werries

Harriett Werries — Wed, 22 Apr 2009 15:34:24 +0000

I am sorry you are having a rough time now but agree with “Ant Kat” that the feelings you have are perfictly normal and you have every right to feel them.
You do need to be talking about them or blog about them, otherwise the stress of trying to be “normal” will get to you.
When Tracy’s dad was sick I felt like I had to be all things to all people and after a while I couldn’t do it any more. I have a feeling that is where you are-you are trying to put on a brave front for everyone else when you may not really feel all that brave and strong. It is OK to let it out. I think blogging is a good outlet because it doesn’t have to be aimed at any one person. Just saying how you feel will help.
Years ago I read an excerpt from a book by Dr. Joyce Brothers that was about her husband dealing with cancer. She said he was so hateful to her and had changed so much that after he died she had trouble remembering the good times and could only remember the hurt. Finally she decided that he acted that way because he was no longer able to control his life and was taking it out on her, even though neither one of them realized it at the time. I saw this happen with my dad and again with Clyde. Both of them changed for the worse as they got sicker and less able to deal with things.
I would guess that the changes in relationships you have with your family is a reaction by all of you to the uncertainty and fear you have all been feeling. The ways people react to you may be because they don’t know how you want them to react. They may be afraid to acknowledge your illness because they may think it will make you feel bad to talk about it, or, it makes they feel bad to talk about it. They “are” afraid you will break! Since they have all these issues they ignore you.
I think about you a lot and am glad to see a new post. I didn’t mean to write a book but hope some of this helps a little. I pary for you.

Comment on April WOW by Aunt Kat

Aunt Kat — Tue, 21 Apr 2009 15:42:55 +0000

I’m thinking it’s very normal what you’re feeling after what you’ve been thru and are still going thru. Find someone to talk to about this whether a professional counselor (your dr. can recommend one) or a real good friend. Blogging about your feelings at least gets them out and is an option if you can’t use a professional for whatever reason. But don’t beat yourself up over feelings that you have. If you have those feelings, then they are real and important.
I love you!

Comment on So quick update and a tagged item by codayHouttyViomocype

codayHouttyViomocype — Sun, 28 Dec 2008 20:54:08 +0000

otlltkoepwbiwparwell, hi admin adn people nice forum indeed. how’s life? hope it’s introduce branch

Comment on So quick update and a tagged item by chrissandel

chrissandel — Thu, 11 Dec 2008 17:30:25 +0000

Not bad. That is one of the better random band names I’ve heard.

Comment on VERY quick update by Nellie

Nellie — Fri, 07 Nov 2008 02:48:59 +0000

Hey guys. I’m praying for you all! I think the unanimous family decision is probably the best one. One more round of chemo would only be worse than this one since chemo has a cumulative effect. I wish I wasn’t sick so I could visit her. We would’ve stopped by last night while we were in Springfield but I have been sick for 2 weeks and if my immune system can’t fight this crap off I can only imagine what it would do to her.

Comment on update by Tracy

Tracy — Wed, 29 Oct 2008 19:45:32 +0000

We’re praying for you Johnna. Stay strong and lean on God.

Comment on San Francisco by Nellie

Nellie — Mon, 20 Oct 2008 03:37:28 +0000

Johnna,

It’s ok to not be fine! You’re going through chemo for pete’s sake!!!! You need to stay strong for yourself to fight through this but you dont have to be so damn strong for everyone around you!!!! It’s all of us that need to be strong for you!!!! So stop it!!! Focus on breathing and getting through the day and getting well. You remind me of my mother when she was going through chemo. She was physically and emotionally done just as it sounds you are. She didn’t think she could do one more but she did somehow manage to muster up the strength to go through just one more treatment. And God was listening to her and that was her last one. I am sure He is listening to you right now too. Be strong for yourself and know that we are all praying for you. You are allowed to have crappy days!!! I love you! Hopefully, this will all be over soon!!!!!

Comment on Not a lot new by Tracy

Tracy — Tue, 16 Sep 2008 20:11:41 +0000

How much money did you make? Gonna post any pictures?

Comment on A Real Live Update! Shocker I know :o) by Uncle Bill

Uncle Bill — Mon, 15 Sep 2008 02:02:23 +0000

I’m sorry to say it’s so sad to see this Blog. Site has died. It was the only way to get news from all of you. I pray all of you are doing great. Take care.

Comment on Kara and Johnna in the State Journal Register by Candice Jacobs

Candice Jacobs — Sat, 06 Sep 2008 19:44:08 +0000

I hope you have a great benefit tonight!!! I will be thinking about you. I didn’t know how else to puchase
or bid on an item. So, I just made a donation through paypal. Good Luck! Angel Candice

Comment on GREAT NEWS…I’M SO HAPPY I’M CRYING by Sarah Miller

Sarah Miller — Fri, 22 Aug 2008 01:44:06 +0000

yeah!!!!!!!!!!!!!!!!!!!!!!!! I can’t wait to see you on the 6th to give you a big hug.

Comment on GREAT NEWS…I’M SO HAPPY I’M CRYING by Eddie Lowen

Eddie Lowen — Fri, 22 Aug 2008 01:07:41 +0000

Johnna, a lot of us at West Side have been tracking your progress and praying for you. It’s a relief to hear of your good news. Continued blessings.

Comment on GREAT NEWS…I’M SO HAPPY I’M CRYING by Megan

Megan — Thu, 21 Aug 2008 14:43:48 +0000

That is wonderful news! God is great!

Much love!!!

Comment on GREAT NEWS…I’M SO HAPPY I’M CRYING by Josh

Josh — Thu, 21 Aug 2008 14:30:55 +0000

Awesome news, praise the Lord!

Comment on OMG…I know…a post…can you believe it? by Kara

Kara — Thu, 21 Aug 2008 14:23:22 +0000

um, we’re only going for the dinner? I was unaware of that…

Comment on GREAT NEWS…I’M SO HAPPY I’M CRYING by Tracy

Tracy — Thu, 21 Aug 2008 02:02:30 +0000

WONDERFUL, WONDERFUL NEWS!!!!! Congratulations! )

Comment on GREAT NEWS…I’M SO HAPPY I’M CRYING by Nellie

Nellie — Thu, 21 Aug 2008 00:18:19 +0000

I’M SO EXCITED FOR YOU!!!!!!!!!! YOU ARE SO STRONG!!!! KEEP FIGHTING….SEE YOU ON SEPTEMBER 6TH!

Comment on OMG…I know…a post…can you believe it? by Tracy

Tracy — Wed, 20 Aug 2008 13:17:53 +0000

Yeah!! Work really hard so you can get in that car! I know you can do it!! See you there!! We’ll have fun! )

Yeah for disablitlity too!! God always provides!

Comment on Quick Update by Aunt Kat

Aunt Kat — Thu, 14 Aug 2008 11:38:20 +0000

Still thinking about you and praying for you. Keep up the good work on the PT and use those pain meds!
Love you!
Aunt Kat

Comment on Quick Update by Sarah McCleary-Stuffings

Sarah McCleary-Stuffings — Thu, 14 Aug 2008 02:44:23 +0000

Well, I’m glad to hear that you are at least still able to get up and walk around! I’m entirely familiar with the pain that comes from surgery after the anesthesia wears off, and my only advice is to keep taking your pain med’s. Hope to get another update soon since you’ve figured out how to get around the block.

Comment on Quick update from Kara by Johnna

Johnna — Tue, 12 Aug 2008 23:15:37 +0000

well i can’t get to wordpress to actually post an update so i thougt i’d post a comment to what i can read…so here’s an update…things are going FANTASTICALLY really…the pain is under control and a lot less than I was expecting…my mobility is amazingly better than I thought it would be…i have a leg imobolizer that I’ll have to keep on for a while (no def. for “a while” I was just told “a while”) so I can’t bend my knee or my hip/thigh to sit which is akward but we’ve done quite a bit of physical and occupational therapy today to work on that (sitting on toilet, up and down stairs etc) and that’s gone great…I know this may be immodest but I’m rocking at the mobility thing …My O2 levels still crash when I sleep b/c I stop breathing as soon as I actually go to sleep so we are still having to look into that…right now their cure is O2 when I sleep which is great for here…not so great for home seeing as I have no O2 there…so like I said working on that…otherwise things are good…just trying to stay on top of the mobility thing b/c I don’t want to get stiff and immobile so I push myself a bit (not too much but a bit)…the therapists keep telling me they rarely have patients who are actually excited to see them and don’t mind them (the therapists) pushing the patient…the crew up here in 4B are amazing! Kudos to them! And peace out and love to all

Comment on 12 hours and counting by Sarah Miller

Sarah Miller — Mon, 11 Aug 2008 10:40:16 +0000

Love and will be praying for you. Hang in there. You will be sleeping, it will be your family that will be waiting and nervous. Keep your head up. Love Sarah

Comment on doing better by Tracey

Tracey — Sun, 27 Jul 2008 14:06:35 +0000

quadriceps. and possibly tensor fascia latae, which is an abductor (pulls your leg out to the side), and gluteus medius and minimus. those are all side hip muscles.

i love anatomy

Comment on Under the Tuscan Sun by Bethany B

Bethany B — Thu, 24 Jul 2008 04:19:14 +0000

Thank You for posting this. God has been trying to tell me this for years, and I didn’t get it until I read this post. You seriously posted something that changed the course of my life, and I just wanted you to know that God is using you in this way.As a bonus, I really want to watch this movie again. You are awesome and I am praying for you!

LOVE!!!

Comment on August 11, 2008 by Sarah Miller

Sarah Miller — Sat, 12 Jul 2008 11:57:26 +0000

yeah no chemo for a month. That is awesome. Hopefully you will reegain your strenght and blood back before the surgery.

Comment on E296 Memorial Medical Center Springfield by Jeff

Jeff — Sat, 12 Jul 2008 01:50:00 +0000

So tell us about the benefit, silent auction, etc. Did I miss something in earlier posts?

Comment on I’m so sorry by johnnahood

johnnahood — Thu, 03 Jul 2008 14:44:42 +0000

lol good point…number is 217-899-8867…if I don’t answer the phone leave a message…I used to rush to the phone no matter what was going on but often now something is going on when people call (i.e. dr. appointment, it’s time for my shot etc.) but I do call people back

Comment on I’m so sorry by Uncle Bill

Uncle Bill — Wed, 02 Jul 2008 23:56:16 +0000

Steve Car, Aunt Jeans son. The number we have is the one we’ve called.

Comment on I’m so sorry by Kara

Kara — Wed, 02 Jul 2008 20:02:41 +0000

um, who the heck is Steve, Uncle Bill?

And Nana should have Mama’s number at least… you can usually get Jo on that number…

Comment on I’m so sorry by Uncle Bill

Uncle Bill — Wed, 02 Jul 2008 18:14:11 +0000

Hum,how do we call without a number? We have called and left a message but got no call back about Steve. Maybe we have the wrong number?

Comment on Saturday night—still at the hospital by Jeff

Jeff — Tue, 01 Jul 2008 19:41:59 +0000

It’s Tuesday….where are you? xx000 Jeff

Comment on Hey everyone :) by Nellie

Nellie — Sat, 28 Jun 2008 04:30:36 +0000

Johnna Jolene….I’ve been a PA for a year and working in the ER, I am not quite sure I have ever had any PE patients blow it off as heartburn….Heart attack patients, yes. Last time I checked a PE was a little more painful than heartburn. Did you have shortness of breath? When are you going to be around? I am scared to come see you b/c I dont want to make you sick…I’m around sick people all the time…but I guess if I shower well and am not feeling bad then you’ll be ok. I thought about coming tomorrow, but apparently you have a wedding shower. I work Sunday so that’s out. I am not sure yet what my July schedule is like. Are you booked on all the weekends?

Comment on Hey everyone :) by Jeff

Jeff — Sat, 28 Jun 2008 01:37:58 +0000

Johnna Hood – for pitty sakes! You just never – ever do anything the easy way. I hope the PE’s and the visit to Avanti’s are coincidental and totally unrelated. I would hate to have to give up my Gondola habit. xxoo Jeff

Comment on Romanticizing the Prostate by Rethinking

Rethinking — Fri, 20 Jun 2008 20:56:02 +0000

Somehow i missed the point. Probably lost in translation Anyway … nice blog to visit.

cheers, Rethinking

Comment on Angelpig Aurora LollyGagz by Sarah Miller

Sarah Miller — Thu, 19 Jun 2008 21:38:16 +0000

I thought the 3rd round would be a little better. I will have to come show you my 2nd picture. I need to come and see you. Sarah

Comment on No more chemo until people actually TALK to me by Aunt Kat

Aunt Kat — Tue, 17 Jun 2008 11:57:18 +0000

Go get’em, girl! Do NOT let them push you around and not give you answers. It is YOUR leg and life here and you are the only one who can make the decisions about it. If they’re not talking to you or are giving you the runaround, then keep yelling until they hear you or get someone who WILL answer your questions. We’re all here for you but unfortunately, you’re the only one who has a say in all this.
Love you much!

Comment on No more chemo until people actually TALK to me by Mary

Mary — Tue, 17 Jun 2008 04:02:40 +0000

It sounds like a second opinion is a very good idea at this point. The Sarcoma Alliance will help with up to $1,000 for this.

http://sarcomaalliance.org/assistance.html

Although your doctors may not be explaining this, usually chemo is done before sarcoma surgery to see the response of the tumor. They only know the response for sure when they remove it and do pathology on it. Based on the response, or lack of response, the chemo drugs can be switched after surgery.

I hope things get better. If your gut is telling you that you are not seeing the best doctor, and if your doctor doesn’t have the experience that can make a difference in your survival…follow your gut!

Comment on Quick Update and a check on everyone else by Tracey

Tracey — Sat, 14 Jun 2008 20:16:00 +0000

nothing happening here. we’ve actually had LESS rain than average lately. (by that, i mean it only rained for a while yesterday instead of 2 or 3 full days of several inches of rain throughout the week.)

Comment on A Big Thank You by Tracey

Tracey — Tue, 10 Jun 2008 04:19:05 +0000

i was not out to babysit. i was out to visit. it was as much treat to me as it was to you.

Comment on Manifesto Part II (Especially for Elizabeth b/c she asked :o)) by Elizabeth

Elizabeth — Mon, 09 Jun 2008 21:58:57 +0000

Thanks Johnna! I love hearing the inner workings of your mind, even if I don’t always understand them.

I love the analogy of the person in the pit, but I have lots of thoughts about it.

First, while family and friends should help the person out of the pit, they also should help the person learn how to avoid pits in the future, right? Constantly bailing a person out of a pit they keep falling into isn’t healthy for anyone. Though, if anyone were to keep bailing someone out, it should be family.

Second, not everyone is capable of helping a person out of the pit. Sticking with that analogy, if I am handicapped in such a way that getting into the pit would endanger BOTH of us even more, maybe I should get help instead and cheer my family member on.

That being said, neither of those options allow me to be passive when my family members are having problems, nor should I just be a cheerleader. I think the hardest part is figuring out how to help people we love without enabling them, without prodding them to grow and become more capable people.

I hope things go well with Dr. Rao.

Comment on Quick update by Elizabeth

Elizabeth — Fri, 06 Jun 2008 05:53:40 +0000

Kara, you’re funny … I love how unfiltered you are on the internet, and just in general.

Johnna, I’m glad to hear you have LTD! That is great news, even though its adding some stress right now. It’ll be better for you in the long run.

Don’t forget to be working on Social Security Disability, too.

I’m praying for you!

Comment on Quick update by Kara

Kara — Thu, 05 Jun 2008 20:19:31 +0000

wait a minute…

that should have been “note to everyone else”

b/c you know me well enough to have read my tone…

Comment on Quick update by Kara

Kara — Thu, 05 Jun 2008 20:18:44 +0000

note to you: (not to self, hehehe)… no anger in any of the above posts…

outrage

disbelief

loathing, maybe

but no anger

Comment on Quick update by Kara

Kara — Thu, 05 Jun 2008 20:17:49 +0000

um, you have LTD? But nothing new is going on? What stuff are you doing???

Comment on Quick update by Kara

Kara — Thu, 05 Jun 2008 20:16:58 +0000

Um… WTF??? I was NOT invited to any type of un-birthday party!!!!

Comment on Romanticizing the Prostate by Aunt Kat

Aunt Kat — Sat, 24 May 2008 12:26:32 +0000

Do what you can, darling. I know how your mom feels but you are an adult (who REALLY needs her mommy right now) and the choices are yours to make as long as they don’t adversely affect anyone else.
Love you and take care
Aunt Kat

Comment on Romanticizing the Prostate by Tracey

Tracey — Sat, 24 May 2008 04:27:31 +0000

hey sugar. i have to say, i agree with both you and your mom. no, you shouldn’t be in a bubble. however, you REALLY need to take it easy. your running around on saturday is quite likely why you felt cruddy sunday and monday. your body isn’t running at 100%, so you can’t run like you once could. going to the park for a walk/roll was ok, but then going all the way up to peoria was probably a little more than what you can physically handle. please remember that while you CAN get out and do the things you want to, you have to take things much slower than perfectly healthy/ other people do.

that said, i do think going to visit sharah was a good idea.

i think it would behoove you to check with your doctors to see if taking any kinds of vitamins or supplements would help your immune system out. absolutely DO NOT take anything without consulting with dr’s rao or nanavati first, as a lot of supplements can interfere with chemo and all sorts of other treatments. but at least an immune system booster like vitamin c or similar would be helpful, if it doesn’t counteract the meds.

love you girl, take care.

Comment on Romanticizing the Prostate by Tiffanie Fox

Tiffanie Fox — Fri, 23 May 2008 16:02:21 +0000

Johnna,
Wow, it has been so long! I would like to say hello and hang in there. What an amazing website you have here. I learned of this from Tracy Werries Brown.
You have always been a wonderful and sincere individual, stay that way! God is on your side girlfriend! You are in my thoughts and prayers!

Tiff

Comment on Sorry it’s been awhile :o( by Sarah Miller

Sarah Miller — Tue, 20 May 2008 22:21:44 +0000

Good thing your hair is thick. Sorry to hear about that. I have been thinking alot about you lately. Hope to see you soon so I can show you a picture of my punkin. Due Date is Dec 29. Love you and miss you Sarah