Reflections of The Heart

Ok first I apologize if there are a bunch of typos here. I’m posting from my blackberry. Secondly, for those who don’t know my cancer has come back and spread. In July we took out a tumor in my lung surgically. Went in with bad chest pains two Wednesdays ago. PET results Friday showed three new tumors in my lung measuring 13, 14, and 15 mm. Also showed a 2 cm mass in my chest wall, a 2 cm mass in my right pectoral muscle and a 7 cm mass near the lining og my heart. We go in Monday to see Dr Godwin new oncologist bc Dr Rao told us no point in treatment and I need someone who thinks there is a chance on my team. How am I? Tired, in pain, scared out of my wits, in pain, confused, in pain, angry, in pain, sad, in pain and determined – not necessarily in that order. I’ll try and post dr. Appt results.

Ok so the scans came back clean YaY! I do have a tear in my knee and see the surgeon about that on Saturday but it’s not related to the cancer (though explains why I have sooooo much pain in PT) so I’ll update on that next week (probably Tuesday or after so that I can update ya’ll on the CPS-3 initiative for the American Cancer Society as well since I have a meeting for that on Monday night…Remember most Relays for Life are coming up SOON! Anyone interested in Sangamon County’s Relay it’s on June 20th and the website is here…Let me know…I know some peeps trying to get a team together!) Peace out and love to all!

Hey everyone. Long time no update…sorry…it’s been…well it’s been. I’ve had several inquiries into how I’ve been doing lately (shout out to Jen Ann and Morgan and Amber who’ve most recently asked) so here goes. Well as the one year anniversary of the diagnosis date has approached and past (April 11th), I have realized that while the years have seemed to have flown by since college this past year was potentially the slowest year of my life. Physically I’m doing pretty well. Back in PT (60 degrees active when I really push it) and that’s going well except for the excruitiating pain in my knee…tolerable pain in my thigh but the knee is bring me to tears and want to scream bloody murder pain. We do 6 month scans on May 6th and go in for the results May 11th…Yes I promise I will post that day to give results, I’m even putting a reminder in my phone right now. (for 6:00 PM CDT since the appt isn’t until late morning/early afternoon).

Otherwise things are. They just are. Physically, as far as I know, I don’t have cancer anymore, emotionally/psychologically this stage has been, overall, the hardest part. I mean chemo and that last hospital stay were individually worse, but at least then I felt like I was fighting something, that I had a purpose and that there was light at the end of the tunnel. Now I feel a lot more discouraged than I ever did last year. I am not a pessimistic or depressed person normally, but lately it’s all I can do to put on a happy face. I have a lot of anger inside, a lot of resentment and a veritable OCEAN of frustration all boiling around. It feels like all the negative emotion is trying to gobble up the positives, which I guess is what negative emotion normally tries to do but I’ve always had enough positive to prevent that spiral. Now however…sigh.

Ok this next bit may not make sense but I’ve got to ummmm vent I guess. My whole life, I’ve always tried so hard to make sure that I live by the rule that there are at least three sides to every story (3 if there are 2 people involved, 4 if there are 3 people involved etc). Yours, Mine and the truth. We all see things and react to things on an individual basis which is very rarely more often never going to be the “reality” of the situation. And the person with whom we are interacting is going to have their own “filter” through which they view any situation. I’ve always tried my best to put myself as much as anyone can into the other person’s shoes when interacting with others. 90% of the time I would then alter my own if-it-were-only-me reaction to fit to, emcompass, offer understanding to the other person.  I’ve always felt I’ve done a pretty good job of it. And I’ve always felt positive about my interactions with other people and my reactions to and with them because of this. In otherwords, the emotions I felt were generally positive ones, compassion, understanding, caring, liking, etc. In the past year I’ve focused so much on the small sphere of myself (as I type this one side of my soul is crying “DESERVEDLY” and the other side is crying “unfortuneately!”) so I don’t know if this is why but it seems now that while I still try to understand where the otherside is coming from and I still alter my reaction or interaction sometimes in accordance, about 75% of the time now I have a lot of negative reactions, i.e. anger, frustration, outrage, disbelief, uncaring in reaction to it.  I find myself more quickly jumping to “I don’t care damnit” than “I understand and I want to help.”  It frustrates the hell out of me.  I get sooooooooooooooooooooooooooooooooooooooooooooooooooo angry with myself for even thinking that way and that perpetuates the cycle of negative emotions. 

In the past year I feel like I’ve gone from happy to angry and purposeful to purposeless.  I’ve lost relationships and every relationship has changed–98% of them negatively and part of me shouts “not your fault or problem” and the other part doesn’t shout anything…it just constantly weeps for the lost and changed relationships.  I feel like the majority of people treat me like a) I’m normal again when I’m not, b) like nothing ever happened when it did c) like I’m about to break when I’m not or d) they just don’t bother to interact with me at all.  And while 50% of this feeling is probably all in my head, I’m also sure that it’s actually happening the other 50% of the time.  And I don’t know how to deal with it.  I AM better and can physically do so much more than I could even a month or two ago.  However, I still can’t drive so I have to depend on someone else for ANYTHING outside of the house.  I still can’t sit for longer than about an hour without getting up and moving around.  I still can’t be up and moving around for longer than about 15 minutes before I have to sit.  I’m beginning to accept that 100% will never be again (and that’s not pessimism speaking, just realism…hell if I’d let him, I’m 80% sure based on Wednesday’s appointment my surgeon would actually say “you’re good…no more need for PT or to see if you can go any further because you’re further than I ever thought you could get at 60 degrees active knee movement”).  But there is still so much that I CAN do…I can shower by myself now, though I still won’t if no one is home b/c it’s still really difficult and I’m fearful that the first time I tried to when no one is at home would be the time that my leg would give out on me.  It’s pretty much warm weather now so I don’t have to have help for my socks anymore yay!  But I can’t physically or emotionally jump back into life like nothing happened or like I’m anywhere close to where I was 13 months ago, because I’m not.  So basically, physically I’m fine though I still get tired and worn out a lot faster than I ever did before cancer.  But as for emotionally/psychologically?  I just am, and I haven’t fully decided what to do with that fact yet.

I’m home. I’m in a lot of pain which I wasn’t expecting since I had virtually no pain the first time. HOWEVER, while I didn’t talk to Dr. Allan, he did talk to mom and she is very relieved after what she said he said. She said the first thing he said was “It was all fluid”! Yay! Apparently they took the core needle biopsy still and sent it for analysis but after he got in there, he’s confident it is just seroma (sounds like sarcoma, but sermoa is a case where fluid builds up and the body can’t absorb it after surgery…rare for surgery patients (about 4% of all surgery cases) but fairly common for cancer surgery patients (about 10-15%)). They drained 360 ml/cc of blood stained fluid from my upper thigh and abdomen which wasn’t all of it (i.e. lower thigh and right above knee still has fluid there) and it’s already filling back up with fluid this afternoon, so it will be an ongoing issue, but not life threatening! We go back to see the doc on the 25th of February for the official biopsy results but again, he said he was confident that there was no sign of the cancer! YAY…anywho, I have to stay in bed and keep my leg elevated for the next 48 hours and then take it easy on my leg which means no more PT until this issue resolves which from my research on the internet could be anywhere from a couple of months to a couple of years! So annoying but again the lesser of two evils so yay! Just letting ya’ll know. I’ll post the official biopsy results after I see the doc on the 25th, but for now I’m signing off b/c the pain meds work to dull the pain but the pain is still there PLUS I’m loopy/drowzy from the meds so… Love and Peace out to all!

Ok so in the last post I mentioned that my PT was on hold because of the fluid in my thigh. Well actually it was fluid in my thigh and well I guess you’d call it pelvis. Went back to the doctor last week to see about starting PT again and just how the fluid has been in the past month. The body should be absorbing it, but instead the area is actually getting bigger and harder. The top of the “hard” area is even with my belly button (which makes wearing pants VERY uncomfortable) and very hard. It spreads from my hip to about my belly button again, though not all of that is hard some of it’s firm but squishy, and everything in that area hurts badly enough that my pain meds aren’t touching it. The good news is the pain in my thigh is less though so it’s like an even exchange.

ANYWHO, to make a long story longer, I don’t think the surgeon knows for sure what it is. The MRI looks like fluid, however since it is getting bigger and is soooo hard, we are doing a biopsy on Thursday Feb 12th in the morning “for everyone’s peace of mind” (quote from my surgeon). While he’s doing the biopsy, he’ll drain anything that actually is just fluid, so I’m hoping he’ll drain it all and we’ll continue happily on our way with PT. So anywho, please pray for a clean biopsy (good actual experience under the anesthesia as well as negative biopsy results–negative for cancer not negative as in bad results).

That’s about the update right now. Working on my thesis proposal (met with my advisor who liked my topic so now I just need a formal proposal for the department). Otherwise that’s about it. I’m pretty ready to be pain free and start PT back up again. I’m back to not being able to move my knee much at all and I’d really like that to be fixed.

Hope all is well with everyone! Love to all! Peace Out!

have been crazy lately. A VERY brief update
1. Kara fell down a flight of stairs in mid-december and dislocated 2 fingers which were reset but scarring inside her fingers occurred so she will never get full mobility of them back. Can’t drive right now so mama is driving me AND Kara where we need to go. whew poor mama
2. I started PT but am on a break from it because I fell on Christmas Eve and there was some bleeding into the fluid cavities which caused some hinderances in my hip joint for mobility so we have to wait until mid-february to relook at it and see about continuing PT…I’m in constant pain but it’s not OMG pain (when I fell I was literally screaming in pain but it’s just a dull ache all the time now…walking and sitting are both difficult which makes for fun times…NOT!)
3. Everyone is on edge b/c well it’s just been a long hard road for everyone in my household and tensions are getting strained

Those are the big updates…no promises when more updates…sorry…life keeps getting in the way and when I DO have some time to myself all I really want to do these days is sleep so there ya go.

So here’s the lowdown…feeling crappy today…tooth pulled yesterday…supposed to be simple…the student dentist broke the tooth and left the roots intact…dental prof had to come in and cut out roots (don’t ya love it when pulling a tooth turns into oral surgery? Note: hearing the dentist say “uh oh” is never good)…anywho as a result pain is icky but the big thing is it’s having a really hard time cloting due to the coumadin sooooo hopefully it won’t get dry socket! Pray with me please on that…no more pain do I want…anywho other than that…eye dr. thinks it’s optical migraines and not actually damage to the retna or optical nerve from the chemo…however we’ll be doing more extensive tests in January…in the meantime, I can’t watch a lot of TV or be on the computer much (hence the long time to reply to emails…sorry to all) until we figure it out…esp. since he thinks that is probably causing the optical migraines…which sucks as it prolongs the going back to work thing…physical therapy starts tomorrow…at least 4 weeks of that before I can go back to work too soooo yeah that’s where we are…have had some great days recently but still tired a LOT…according to doc and research that is normal…it’s pretty much a 1:1 ratio…for every month of treatment it takes a month to regain previous energy…so it’ll be about 9 months before I’m feeling “normal” again as long as all goes well from here on out…ICKY!!!! So anywho I’m pretty sure that’s it…but in the meantime…God is good all the time…also in the meantime…tagged by my friend Chris with this so here it goes

1. Band Name: Random Wikipeda Link

2. Album Title: Random quote generator (take the last four words from the first quote on the page)

3. Album Art: Flickr Interesting Photo (pick one)

So my album Worth A Hundred Cents by my band The Social Responsibility Theory (ironically, I’d actually name my band this…I like it!) will be released soon for the wonderful price of…wait for it…100 cents.  Album art link here (I can’t figure out how to insert and image…huh).

So the challenge:
1. List your top ten favorite films in no particular order.
2. If you’re tagged, post your list and tag 3-5 other people.
3. Link back to the person who tagged you.
4. Give a hat tip (HT) to Dan.

1.  I don’t know how to tag people or link back (well I’m sure I used to but I don’t want to think about it right now)

2.  This has to be the 2nd hardest top 10 list ever (beaten only by top 10 songs of all time) but I’ll give it my best shot

3.  See Kara’s site (link on side) she’s who tagged me and I love her list too )  I’m pretty much going to use her criteria for this list though take it a step further…she said she could watch her list over and over…I could watch my list EVERY DAY and never get sick of them.

ok so my top 10 in no particular order

1.  Princess Diaries 2…She gets the “prince”, manages to still look beautiful AND change the law to abolish the “Princesses must marry before they can become queen” rule…I love it…could watch it over and over and over and over

2. LOTR trilogy…prolly…no definitely actually #1 if I had to say favorite movie of all time (and yes I have to include all of them as one b/c quite frankly it’s one movie it’s just a long one…it makes no impact and little sense without all of them so it’s one movie darn it).  People in a nutshell.

3.  Under the Tuscan Sun…I know I’m stealing some of Kara’s stuff but see post from this summer as to why this movie means sooooooo much to me and has such and impact…I LOVE it

4.  A Charlie Brown Christmas…Linus drops the security blanket for his FABULOUS rendition of the meaning of Christmas…nuff said

5.  Scrooge (the musical)…I love musicals and I love pretty much any rendition of A Christmas Carol…combine the two and it’s perfect

6.  The Quiet Man…while I love McLintock as well…I enjoy this John Wayne and Maureen O’Hara flick better than the Western…Ireland…small town…sassy heroine…stubborn hero…sparks fly…tempers flare…the whole town gets involved…Funny stuff )  Also reminds me of Sunday morning tv time with Daddy…That and any of his war flicks…not a war flick girl…but love John Waynes war flicks )

7.  The Three Musketeers (disney version with charlie sheen, keifer sutherland, oliver platt and chris o’donnell)…If you haven’t seen it…stop reading RIGHT now and go rent it…best version ever…FUNNNNNNNNY…Love it…classic 90′s adventure flick (including a GREAT soundtrack):o) which leads us toooooooo Robin Hood Prince of Theives which didn’t make the list by a HAIR behind Three Musketeers…RHPoT is a bit more serious and I love my humor but I can’t express how much I love this film…for nostalgic great times with Tracey…for the underlying themes and lessons it teaches…for the fabulous love song from Bryan Adams, oh and Kevin Costner wasn’t too bad looking either ;o)

8.  The American President…Michael Douglas is the best movie Pres ever….seriously…and Annette Benning????? OMG love her!  But my fav part is the speech at the end…I’ve posted about it before and I can’t over emphasize the fact that that minute and a half speech is what America is all about!  Love it!

9.  Dark Knight…I love superhero movies but it’s pretty hard to “wow” me on them (i.e. the Xmen trilogy…loved all three but still had nitpicky issues about them and how they portrayed their characters etc) but I LOVED Dark Knight…no complaints at all about anything…thought the whole evil for no reason theme was fabulous loved several lines…simply loved it

10.  Twister…I LOVE LOVE LOVE disaster movies like ID4, Day After Tomorrow, 10.5, etc…I know that probably makes me weird or something but really I love them…Twister has special meaning for me but beyond that I love it for it’s soundtrack, humor, happy ending…it makes me happy )

So anywho there’s my list which took me forever to come up with…not because I wanted to add a lot more, but b/c with my criteria I had a hard time coming up with movies I truly could watch every day without hating them after a while ) 

Love and peace out!

100 posts I can’t believe it!  Anywho…I’m feeling pretty good in comparison to the past 8 months )  We are officially not doing chemo round 7 so here’s how the next couple months are shaping up

1.  Still not released for work (bummer)…major setbacks on knee after the hospital stay and non movement so my docs won’t release until I’ve worked with PT enough to be able to sit without my leg being elevated and extended (also until #3 gets straightened out)…

2.  PT starts December 11th (earliest we could get in)…3 times a week for at least 4 weeks then reevaluate.

3.  Seeing and eye dr. on Wed (not a big box eye doctor…one who specializes in after effects of chemo)…my vision is messsssssssed up… and it’s not my prescription because it’s with or without my glasses…things just…disappear…I mean that literally…the other day I was looking at my brother and he had no left arm…AT ALL…the worst though is after about an hour on the computer, letters start to disappear from words and seeing as my employment skills are all not only computer related but computer dependent…well we have to figure out if it’s a temporary thing or what soooooo seeing Dr. Posegate on Wednesday and we’ll go from there…

4.  We have decided that my skin problems are chemo after effects related (they sooooooo did not disclose all this “after affects” crap)…basically my skin is either soooo dry it’s like a sun burn that’s cracking or my skin is like leather for a day and then reallly peely…like my hands right now are trying to completely shed it’s skin…I was lotioning but it made it tons worse unless I could literally lotion my entire body every 15 minutes…bad news is due to #5 when the skin breaks it’s a major deal b/c the bleeding takes a LONG time to stop…even just a little bit

5.  Coumadin is driving me insane…well actually a. remember to take it but more importantly b. the food restrictions are literally driving me nuts…well and the biweekly blood draws that bleed forever drive me nuts too

6.  In addition still on 150 of lovenox so reallly really thin blood (due to blood clots in and near heart which apparently could take 3 months or more to dissolve even with reallly really thin blood…who knew???) anywho…complication right now with that…the site where I gave myself my shot on Tuesday is now as hard as a rock (literally) and the bruise is spreading like wildfire…I normally bruise from the shot but it’s usu. just a quarter size bruise and we’re done and I’ve NEVER had a hard lump before at the injection site…soooo I’m debating on the brave the ER or wait until my appt. on Monday…it hurts but…also worried that the (WARNING WARNING WARNING WARNING WARNING….GROSSNESS COMING UP SORRY) anywho also worried that the bloody water during my BM today had something to do with the lump and giant bruise on my stomach…usu. don’t have that much blood unless I’m on my period and well I don’t have one of those anymore…soooo yeah…trying to weigh my fear of being admitted to the hospital again with my safetly…it’s a toughy (seriously)…Since the 16 days in the hospital where THEY made me sicker than I was (and I was plenty sick enough) I seriously have a HUGE phobia about being admitted again…sigh

So I think that’s the major updates for now….ohhhh had all my post scans and they looked good…apparently I have a large fluid buildup that will probably have to be surgically drained (not just use a needle and suck it out like the last two times) at some point in the future but not right now since it’s not bothering me exorbantly…there was also something on the MRI that did something but they think it’s normal (I was a bit confused about what that was since one dr. told me it looked great and the other was like well there was a small descrepency but nothing to worry about…I don’t question anymore b/c frankly I can’t take anymore explainations or “bad news” soooooo I don’t ask and also b/c quite frankly my brain doesn’t keep up like it did 8 months ago…THAT’S and after effect of chemo I knew about and was frankly expecting)…anywho everything looks good except for this lump on my tummy.

Ciera turns 2 next Thursday (I can’t believe it!)…The b-day party is Sunday and I can’t wait…YAY!  Anywho NOW I think that’s it )  I hope everyone had a great Thanksgiving and Black Friday!  I did…great food (Daddy cooked…nuff said )) which I actually could taste and had an appetite for (I love being post chemo) and then Dan and Chass and I went out at 4:30 this morning for Black Friday and got in at about noon…it was good fun all the way around (LOL except let me tell you shopping on Black Friday in a wheelchair is a challenge in and of itself LOL)…Love to all )  Peace out!

Well, Jo got to leave teh hospital yesterday.  She’s currently at my house waiting on her room to get cleaned out (the kids have been home alone most of October and her room has kind of become a “catch all” place to put things. 

Anyway… she’s doing okay… still has the clots, but knows the symptoms of PEs or embolisms in general, so she should be able to get to the hospital if needed.

That’s it for now

Love to all

thanks for your thoughts and prayers.

Okay guys, Kara here.  As you can imagine life has been amazingly crazy.  Noone’s getting sleep, and we’re all pretty ready for this to be over.  I’ll try to update again later because I know that everyone will want one (thanks for all the emails and messages.  Sorry I couldn’t respond one-on-one).

Highlights

• Donnie and I went to visit on Tuesday night.  She seemed MUCH better and they thought she’d be home by today (they HAVE to stop guessing when she’ll go home.  Something else goes wrong everytime).  We laughed and visited and had a great time.  She was in MUCH better spirits and was  “Jo” again.
• Same night she woke up with really bad chest pains
• Emergency CT in the middle of the night
• 2 blood clots, one stationary at the base of her port; one not stationary moving around in her heart
• I went and visited her last night and even though I was in a fabulously ridiculous witch’s costume (don’t ask) she was feeling so terrible it didn’t cheer her up much… Looking much worse again… now she looks bruised everywhere and her skin is peeling heavily.  Noone knows why.  Again, I think the hospital is making her SICKER.  She still hasn’t been able to hold down food, which means she’s been nutrient-less for over 4 days now.  She tries to drink ensure, but it’s not going well…
• They’re doing surgery to remove the Port today
• Hoping that her body will naturally dissolve the clots because her platelets are too low to give her blood thinners
• Will probably do a blood transfussion before the surgery because all of her counts, which were finally up, are back to critically low levels
• After we leave the hospital this time, we’re done.  The family unanimously decided the benefits of the last round of chemo are not even close to worth the negative side effects (these last 2 weeks, but worse).
• This is day 15 in the hospital.  Still no idea when we’re done.  We had been doing visitors who are well, but I’m not sure now since she’s neutropenic again
• I’ll try to update after the surgery
• Please pray.  There’s no contingency plan right now if her body doesn’t naturally break the clots and they’re located in potentially life-threatening areas.

Well, I finally finished my own anti-biotics so I got to come to the hospital.  Which is good, because I think my mom’s really at her wits-end…

Let’s see:  Good news:  Her counts are up, actually well enough to go home

Bad news:  She looks really, really bad, guys.  I mean really bad.  This is the first time I’ve seen her through all of this where she’s looked majorly ill.  She doesn’t GET to leave because of this.  They can’t figure out what’s wrong.  She started running a high grade fever again Thursday evening and they started giving her even more anti-biotics and anti-fungals.  She had a chest x-ray and that looked fine.  But she’s broken out ALL over; she pretty much looks like a person who took a bath in grape juice:  Angry splotches everywhere.  Her face is purple red and she’s starting to get raised red/purplish bumps on her head.  She keeps having these vicious rigors that have her screaming in pain.  For those who know her, you know this is bad.  She’s been such a trooper through this, gritting through the worst, so for her to be expressing pain is major.  They’ve started a pain med for that and it seems to be helping a little.  But we still can’t get the fever to stay down.  It hit a high of 105.9 last night and worried all of us.  She’s not able to hold down food (though as I write this she’s been successfully holding down 1/2 cup of noodle soup for about 20 minutes, which is the first food she’s been able to hold down in 4 days, so keeping our fingers crossed) and she throws up as much medicine as she’s able to keep down.

Their current best guess is she’s developed an allergy to penicillian.  So they took her off all penicillian based meds yesterday and are trying to flush them from her system. But if she’s still got the full-body rash and fever tomorrow, they’ll do a full-body CT tomorrow to try to figure out if there’s an abscess or other foreign thing that her body is fighting against.  If not, they’ll look at taking out her port.  But that’s the best guesses they have right now.  And they readily admit that they’re guessing: aka, they really have no idea what’s going on with her body.  She’s developed an allergy to tape and band-aids, she’s all bruised from the shots they keep giving her… she’s just looking really bad, guys.

Please pray.  We love you all…

Well right now all I can do is hope that I’m out of here by Friday so that I can make it to my cousin’s bonfire this weekend (if not, I truly may break something b/c I’m so f$&*ing sick of this messing with my life…seriously what am I saying…I have no life currently and it’s getting old).  My WBC’s haven’t gone anywhere even with the booster shots (they were at .500 on Sunday and have actually slipped a little into the .300′s right now)…we’re going to keep doing the booster shots and just wait and see (apparently there’re no other options????!!!!!????!!!!!).  The doctors all assure me that “eventually” they will just come back up on their own…well yippee for them…we’re just letting them build up to bring em down again anyway whatevah…I’m scheduled for chemo on Monday the 3rd and they have to push it off if my counts aren’t there, but if it gets that far then they’ll keep me here until the counts go up (which get this could be up to or more than 2 additional weeks which gets into messing with Thanksgiving ) then potentially keep me here for the chemo right after though they may send me home and make me come back which would be GREAT b/c at least I’d get a break from this hospital room, however the doctors have all warned me that the likelihood of this same scenario I’m in now after the next round is great b/c my body has just taken so much chemo that even the boosters aren’t working right so I shouldn’t be suprised if I end up BACK in the hospital for low WBC after the next round just like with this round…so basically we’re waiting for my body to repair itself so we can break it again so it can take a longer time to repair itself…ugh the walls of this hospital room are closing in on me and I can’t even take a damn walk in the hall…which in an of itself is bad since I’ve lost about 50% of the progress I HAD made on being able to move my damn leg…it’s set me back to mid september levels of movement with the leg!!!!!!!!!!!!  I could scream right now I really could.

Hey everyone.  Well still in the hospital…BUT good news is fever has stayed steady at 99.5 for 24 hours (YAY!!!!!!!!!!!!!!!!!!!!!!) and chills have stopped.  I actually ate food that stayed down yesterday and the resident said this morning that my WBC count was higher than .001 (which it held steady at Friday and Saturday as well)…He said Doc G. would let me know about it when he came in but they were waiting for the other part of this morning’s blood work to come back before he came in.  Yesterday ALL my counts fell low enough to be in the “critical” category so we did 3 transfusions (2 units of red blood cells and a unit of platelets) as well as a lot of IV supplements like potassium, calcium, etc (go figure since I hadn’t had any food in over 48 hours that stayed down…hmmm my nutrition values were low…imagine that)…but anywho…good news is other than the ever present intestinal issues (which have been around since round 5 actually so I’m actually getting used to them how sad is that)…I’m feeling MUCH better than I was on Thursday and Friday…Hopefully we’ll get to go home tomorrow )  I’ll let ya’ll know…well actually Doc G just came in…the transfusions got my RBC and platelet’s up yay…my WBC is up but still too low to even think about going home, but at least they’re producing so…at least there is that )

In news unrelated to discharge, the hospital nurses probably think I’m crazy (LOL which WE all already knew of course…see I AM feeling better) anywho, I am still a little bit more than stressed out and annoyed with this whole situation (not just the current hospital stay but cancer in general) which I’ve embraced as normal..anywho, normally I’m a pretty calm, even keel, steady “keep me informed but do what you have do do” patient…however in my current emotional and psychological state…well I’ve still managed to be the calm patient on the outside but it’s an effort as opposed to effortless this time…I don’t know if it’s because due to the fact that I’m not having chemo done this time so I have nurses and techs for the most part who don’t know me or if it’s b/c really for the most part I don’t have full RN’s only LPN’s, though actually I suspect it really is me and NOT them but normally instead of being calm and kind I either want to burst into hysterical tears, rip out my IV and beg them to let me go home or I want to throw something at them while screaming, rip out my IV and demand them to let me go home…ANYWHO, the point of the whole story is that I know myself very well and since I recognize that I’m a bit on the brink stress wise I’ve been destressing especially while I’m sleeping while here by listening to Kenny G’s “Miracles” Christmas CD on repeat, over and over and over again…This may sound bad to some, but to me it’s the easiest way to relax me which is great (sitting curled up in a comfy chair in a house with only me in it at the time with a nice cinnamon apple candle burning with the lights out and christmas lights on and a glass of hot cocoa with Bailey’s in it WHILE listening to Kenny G’s “Miracles” Christmas CD is Johnna’s ULTIMATE relaxation time, but since there’s not a comfy chair in this joint, no christmas lights, they won’t let me burn candles, and def. won’t let me have any bailey’s, I’ll settle for what I can get ) )…Anywho just thought I’d share why the nurses might say I’m a little odd in case word got out (grins) 

Love to all and peace out

in the hospital right now.  came in yesterday.  high fevers and chills.  currently have zero immune system (quite literally my blood counts showed no white blood cells which is why they immediately put me in the hospital).  Quite common in cancer patients.  Had a rough night last night…fever stayed steady around 103 and chills and then vomitting and diarhea and abdominal cramps…Don’t know when I’ll get out of the hospital…they are running every culture in creation to make sure no actual infection anywhere…I do know they won’t let me go home until my white blood cell count goes up so…there ya have it.  Ok peace out and love to all.

Hi, Kara here…

I wanted to give everyone a really quick update.

Jo’s quite sick… I’m trying not to feel guilty about that as I visited with Strep, but…  Anyway, she’s in the hospital and will be for who knows how long.  Her white blood cell count is virtually non-existant… she ran around 104 temp all night last night, was throwing up and generally feels gross… they’re pushing fluids and anti-biotics and her fever finally dropped to around 101-101.5 around 6 this morning, so we’re hoping she’ll at least get some sleep.

She’s not in isolation, which we though she might need to be, so she can have visitors if she feels up to it.  Mom’s generally good about putting a note on the door if she’s not.  She’s in room E260 in Memorial…

I’ll try to keep people updated as I know anything…

Oops…I forgot I told Kara she could borrow my laptop to take with her to San Francisco last week, which is why there was no update on Monday…sorry…we did get all the results back and we were good to go (barely good to go, but good to go nonetheless) on chemo round 6…we’re supposed to start chemo round 7 (last one) on Nov. 4th and then the doctor says we’ll “restage” the disease and go from there…restage?????!!!!!!!  Woahhhhh!!!!  When I signed up for this gig it was 7 rounds and that’s it…end of treatment…there was no talk about restaging and going from there…I didn’t ask about details in the hospital about what that meant (though it makes me suspicious especially since Cathy K whom we normally see when I go in for a visit with my oncologist said that “I realllllllly need to talk to Dr. Rao and not her (she’s the nurse practitioner) the next time I come in” huh yeah)…anywho I don’t really want to know what that means right now b/c frankly  round 6 chemo sucked…

WARNING…about to get deep and bitter, not a normal tone to my postings, but I’m tired and not up to pretending today so stop reading now if you don’t want to hear it. 

Relatively it was the longest chemo session it seemed like…I still feel pretty icky today…though I must admit that I’m not really trying to hard to rebound right now b/c well mainly b/c I’m too tired to try to rebound…every spare ounce of energy I have right now (which is minimal) is spent on simply keeping my head upright and focusing on not breaking down into a sobbing mass of hysteria…and right now that takes literally all of my concentration so I’m hopeful of being able to concentrate on getting better soon but seeing as I’m beyond stressed out, my expectations aren’t really that high.  We go into the dr. tomorrow for blood counts and neulasta shot then we actually see Dr. Rao on Friday to talk about final chemo and where we go from here…I have to say that round 7 chemo is seriously up in the air for me…I’m done…physically and emotionally I can’t take another round like this past one so we’ll see…between Mama’s poor health (I swear she had a heartattack yesterday but damn that woman is more stubborn than me about going to the doctor), the INCREDIBLE stress of way too many people in a small house (5 adults 1 2 year old and only 1 adult working), and my feeling like I’ve had the flu for a month along with a leg that is getting increasingly MORE painful, not less I’ve pretty much had it…and there you have it…the main reason I haven’t written anything in so long is mainly that I’m tired of putting on a happy face, I’m tired of saying “Oh, I’m fine” or “Oh, I’m ok, not great, but ok” when quite frankly I’m not…sooooo for future reference if I haven’t had a good day like my last post, you probably won’t see any posts or updates (unless something major medically occurs) for a while b/c I’m tired.  I’m just tired.

Ok so today was the most perfect of fall days…perfect weather…found some perfect carving pumpkins…it was great…:o)  Just thought I’d share that )  On update notes…my counts are down…wayyyyy down…had to have a transfusion on Tuesday and we’ll check the counts again tomorrow and hope it helped enough to continue chemo next week.  (since they were at 20% of where they need to be we’re not getting our hopes up but…)…Anywho we also have to check my ejection fraction again (heart thing) so here’s hoping it’s at least 50% on the tests tomorrow. I’ll let everyone know on Monday what the bloodwork and heart test results were…if they’re good we’ll start round 6 of chemo on Tuesday and then only one left!!!!!  I’m reallly reallly praying hard that they’ll be good b/c as far as I’m concerned the sooner we get these last two rounds of chemo started, the sooner they’ll be done and over with so )  Also tt Dr. Allan about phys. therapy…no go until chemo allllll done and my counts are all back to normal…sucky…but he was very impressed with the range of motion I have in my knee…I can bend it down to about a 60 degree angle and can slowly straighten it with no help.  He was super suprised on the straightening it thing.  Apparently he thought I’d not be able to extend the knee at all on my own so yay…point one for me )  Ok well that’s it for now.  Love and peace out to all.

Ok so I’m not even going to explain how I stumbled onto this website, it’s long, it’s convoluted, it’s a crazy story. However, ya’ll should really read the interview. I LOVED LOVED LOVED LOVED it and it was just a random, had nothing to do with what I searched for, cool page ) Enjoy )

Hello all.  Sorry, it’s been crazy around here.  Right now I’m battling a hell of a swollen throat and major swollen gums (my remaining wisdom teeth we think which of course we can’t do anything about b/c of a. my lovenox and b. chemo…grrr like more complications were needed)…anywho that’s where I am right now…we did end up doing chemo it was just delayed a couple of days (which meant instead of tuesday to friday we were there wednesday night to sunday afternoon)…it was interesting…it wasn’t as bad as round 4 in intensity of sickness but I’m STILL sick from in (imagine a mild to moderate stomach flu) and it’s now been 8 days since the actual chemo was over and the symptoms really haven’t lessened any…which is unusual, however, all in all I’ll take the stomach flu for weeks over round 4 (or round 3) side effects any day…really don’t want to go back to those…I’m hoping since there was such a long span between rounds 4 and 5 that it’s actually kinda like starting over now so that maybe round 7 will be crappy like round 3 was but nothing will be like round 4 and the worst is over????!!!!????? that’s what I’m hoping at least.  My leg is doing alright I suppose.  Still meeting with Dr. Allan this week to discuss where it is.  If I’m standing I can bend it when I move kinda like I am going to crouch (I can’t bend it even close enough to actually crouch but if I push down like I’m going to the knee moves quite a bit more than I thought it would) it only works if I’m standing and actually pushing down with my upper body…I still can’t actually get the knee to bend on it’s own without some catalyst…I still can’t do anything with it when I try to bring my leg back (picture bending your knee to bring your feet to your butt like with jumping rope)…it goes NOWHERE when I try to do that so I’m hoping we’re going to seriously talk about physical therapy on Wednesday when we meet with Dr. Allan.  But the wound is healing beautifully and the swelling is down considerably.  There’s still obvious fluid build up but since I suspect that’s what’s giving me my most stablity when walking (this I gleamed from the fact that the 2 previous times we had it drained, walking was WAY more difficult before it filled back up again) I’m ok with it.  It really swelled while we were in for chemo but has since come down.  Hmm what else…helped daddy build a porch railing this weekend, it was very nice…tiring…but in a good way…Of course I didn’t do much but hold boards, draw lines, sand and paint but it’s a lot more than I’ve been able to do in a while so it was really nice )  Should start round 6 next week and then round 7 on election day and then we should be done with chemo!  Keep your fingers crossed that all goes well )  Love to all and peace out!

with a couple of prayer requests.

1.  Jo won’t start chemo tomorrow.  At the earliest she will go in on Wednesday.  But tomorrow she’ll go in for some more tests.  Apparently her heart is not strong enough for one of her two chemo meds.  If it doesn’t strengthen, she won’t be able to do that med and she really should/needs to.  So prayer for her heart (seriously, just one more thing… this is me being frustrated…) would be amazing.

2.  Things are really stressful at home right now for both Mom and Jo…  They’re expecting these rounds of chemos to be worse on Jo (which in turn is also worse on mom) and there’s some major clashing with my brother and his fiancee and the rest of the household.  Jo was up all night the other night because my brother and Chas just let the baby cry rather than turning out the lights and going to bed themselves or moving the baby to a room where the baby could sleep.  This is obviously NOT going to be a condusive atmosphere for Jo’s recovery and mom and Jo are at their wits end.  Frankly, I think they’re saints, but that’s a different matter.  If you could pray for a softening of Chassidy’s heart (and Dan’s, though Chas usually directs things with the baby) and that they might start thinking of someone else besides themselves at least occassionally that would be greatly appreciated as well…

Pretty much same old same old here…Thank you to everyone who came out last Saturday and made the benefit a huge success!  I’m sure this won’t surprise any of you who were there, but I way overdid it!  LOL seriously…spent the next 48 hours recouping and then caught a cold…have been pretty much doing not a whole lot because of that…did get my leg drained (about a gallon of what the surgeon called “tissue fluid” came out of my leg icky)…still scheduled for next rounds of chemo to start on the 23rd…still can’t walk well (they took 3 of my 4 quadricepts along with the tumor) but it’s getting better…we’ll talk about physical therapy when we go back in to the surgeon on Oct. 8th.  Going to be spending a lot of this week just relaxing, working on my thesis, and getting ready for what my doctor warned me would potentially be the worst of the chemo rounds (apparently because it’s a. been so long since the last one…b. chemo is cumulative so each round is worse than before and the big one c. there are far fewer (hopefully none actually) cancer cells for the medicine to attack so they’ll be more to attack “good” cells)…that’s about it from the cancer end.  Lots of personal stuff going on with Daddy’s wedding last week and Jessi’s wedding this coming week and trying to connect with friends I haven’t been able to spend a lot of time with since April so I don’t spend a lot of time online anymore…I know I’ve been saying this, but really the updates will be few and far between now.  Probably only with major dr. appts (like on the 8th of Oct) etc.  Sorry folks…I know there’s concern and ya’ll want to know what’s going on.  Go ahead and call me or drop me an email which I do check though usu. only once a day (899-8867 or johnnahood@gmail.com) if you get really concerned )  The good news is that no news is good news!  If I have BIG news (good or bad) I usually post pretty quickly, so no news pretty much means everything is status quo so no worries! 

Love and peace out!

Hey everyone.  Things are crazy here so sorry no update sooner.  So why are things crazy you may ask?  Well with the benefit Saturday, last minute things keep popping up so just putting out a few fires and getting all the last minute details taken care of has taken most of my caretakers’ time and mine as well (we’re all aware I’m usually the party planner of the family so…)  Anywho, all is looking well.  Thanks to everyone who has helped out so far and will volunteer time and food on Saturday!  You’re help has been a HUGE stress relief for me!  Great news is final numbers for the silent auction are…get this…45 items!!!!!!  I’m awed by this!  We also got Karaoke as well as a DJ for later in the evening.  I really can’t wait.  I’m so excited to see everyone and celebrate all the great news from the surgery with people (I’m so glad we waited until after the surgery for this so that we could all celebrate together) )

On a different note, I had the staples taken out on Tuesday.  THAT was a fun experience…not!  A lot of the staples had popped out a bit already so they weren’t so bad…but just as many had not and as the skin around them began to heal, it began to heal around the staples…icky!  BUT all in all it wasn’t as horrible as I anticipated.  We go to see the surgeon tomorrow (for the first time since the surgery on the 11th…which seems like a long time to go without seeing him to me but…) and find out if my movement restrictions have changed or what.  I’m also hoping to find out the details on what specificly was removed and the extent of nerve damage etc (we know there was some but not sure to what extend or if it’s permanent or what) so hopefully we can get some more answers tomorrow.  I’ll try and post what went on, but no promises that that will happen until Sunday.  But there’s where we are medically.  We’re going to do the next round of chemo the week of Sept. 22 so I get a bit of a break (Daddy’s wedding is next week and my soon to be stepsister’s wedding is the following week so heck if I was doing chemo and missing those since we had such good results from the surgery and my doc agreed, though for the reason of letting my wound heal but hey whatever gets me my way ;o))

So that’s about it for now.  Love and peace out to all )

Here’s the low down real quick

1.  staples come out tuesday

2.  had a cold last week so was cruddy and didn’t post or really do anything

3.  Doing last minute stuff for benefit on Saturday (Sept. 6) so will probably not post again this week unless new news from any drs.  As of right now no new news…looks to be healing ok…chemo start again towards end of September.

4.  Update on Benefit

St. Louis Cardinals Raffle

«    Four Field Box Tickets

«    On-Field Visit During Batting Practice

«    Photograph of Group on the Field

«    2009 Regular Season (M-F) Date to be mutually agreed upon (excluding opening day and Cub dates)

«$400.00 minimum value*

Tickets are $10.00 ea.

(minimum of 30 tickets must be sold for drawing to be held)**

Courtesy of

The St. Louis Cardinals

(made possible through Jeff Radcliffe and Molly Radcliffe)

* Online bids via the Cardinals website for this package begin at $200.00 for the 2 ticket package

* *If 30 tickets are not sold, money will be returned to those who purchased tickets 

Also some items in the silent auction

Item 1

Raindrops on roses and whiskers on kittens…these are a few of my favorite things, or rather Johnna’s favorite things.  Items are all related to road tripping and dessert and a movie!  Money for the items in the basket was donated by ISPFCU.  Additionally, several items in basket were donated by Kara Hood’s Small Group.

Value:  $50.00

Item 2

Bright copper kettles and warm woolen mittens…Johnna’s favorite things continue with a relaxing evening in. Money for the items in the basket was donated by ISPFCU.  Additionally, several items in basket were donated by Kara Hood’s Small Group.

Value:  $50.00

Item 3

A basket of hand crafted items from some very talented ladies!  Donated and created by employees and former employees of The Purple Puppy Nursery School, Inc. (Auburn, IL)

Value:  unknown

Item 4

Share the gift of creativity with friends and family with these 30 hand-crafted, all-occasion cards.  Donated and created by Kara Hood, P-3 Writing and Design.

Value:  $40.00

Item 5

  Go Green!  Let this thermostat, donated by Burgess and Sons (Girard, IL), help you improve your energy efficiency.   

Value:  $47.00

Item 6

Enjoy an evening of laughs with friends when you attend Donny B’s Funny Bone Comedy Club with this certificate good for any Friday night showing for up to 4 people.

Value:  $105.00

Item 7

Share the gift of creativity with friends and family with these 50 hand-crafted, all-occasion cards beautifully stored in a wooden purse.  Donated and created by Kara Hood, P-3 Writing and Design.

Value: $75.00

Item 8

Share the gift of creativity with friends and family with these 30 hand-crafted, all-occasion cards.  Donated and created by Kara Hood, P-3 Writing and Design.

Value:  $40.00

Item 9

Enjoy a relaxing evening in with this elegant basket featuring exquisite wines and beautiful glasses donated by Paulette Miller.

Value:  unknown

Item 10

Decorate in style with this hand painted “Hope” watercolor painting.  Matted and framed in beautiful complementary colors, this 16 x 20 painting was created and donated by Kara Hood.

Value:  $30.00

Item 11

Enjoy the “Hope”-full beauty of this hand-stamped collage in greens and purples.  Matted and framed, this 11 x 14 collage was created and donated by Kara Hood, P-3 Writing and Design.

Value:  $35.00

Item 12

Indulge your inner chef with this magnificent assortment of the popular Pampered Chef, Ltd. line.  Donated by Pampered Chef, Ltd. Consultant Sarah Miller, this basket is sure to delight amateur cooks and kitchen connoisseurs alike.

Value: $125.00

Item 13

Evenly bake cookies, breads, and pastries with this medium round stone from the popular Pampered Chef, Ltd. line.  Donated by Pampered Chef, Ltd. Consultant Sarah Miller.

Value: $19.00

Item 14

Add this beautiful National Wild Turkey Federation lock-blade pocket knife to your collection today.  Stainless steel blade is 3” long.  Handle and matching belt case in dark gray camouflage.  NWTF logo on knife and case.  Donated by the National Wild Turkey Federation.

Value: $25.00

Item 15

Add this beautiful National Wild Turkey Federation sheath knife to your collection today.  Stainless steel blade is 4.5” long.  Custom-fitted leather sheath .  NWTF logo on knife and sheath.  Donated by the National Wild Turkey Federation.

Value:  $40.00

Item 16

Add this beautiful National Wild Turkey Federation sheath knife to your collection today.  Stainless steel blade is 5” long.  Custom-fitted leather sheath .  NWTF logo on knife and sheath.  Donated by the National Wild Turkey Federation.

Value: $50.00

Item 17

Celebrate with friends and family, unwind with coworkers after a long work day, or treat your clients to a “happy hour” meeting with this certificate for an appetizer party from Lonestar Steakhouse.  Certificate is good for 12-50 people.  1 free appetizer for every 3 persons

Value:  $40.00 to $170.00

Item 18–COMPLETE DETAILS TO FOLLOW

Serve your friends and family in style with this exquisite china set.  Table setting for ____ people and serving items including ________.  Donated by Sharah Garrett.

Value:  Unknown

Item 19–COMPLETE DETAILS TO FOLLOW–condo we have but # of days etc is not set yet…when I know all details I’ll post.

Enjoy 4 days and 3 nights at the beautiful Lake of the Osarks.  Stay at the beautiful _____ condo, a brand new, 1800 sq. ft., 2-story condo on the _________.  Donated by

Value:  $900.00

Item 20

Protect your tabletops in style with this 6 piece coaster and trivet set.  This hand made set (4 coasters and 2 trivets) features a music motif in beautiful earth tones.  Donated and created by Kara Hood, P-3 Writing and Design.

Value:  $45.00

Item 21

Protect your tabletops in style with this 6 piece coaster and trivet set.  This hand made set (4 coasters and 2 trivets) features a gorgeous cherry blossom motif in reds, blacks and whites.  Donated and created by Kara Hood, P-3 Writing and Design.

Value:  $45.00

Item 22

Indulge yourself (or start early on Christmas) with a full body massage from KM Hairworks and Spa—An Experience Above All Others.

Value:  $60.00

Pamper yourself (or a friend) with a pedicure from KM Hairworks and Spa—An Experience Above All Others.

Value:  $30.00

Item 24

Whether you want a completely new look or want to maintain your current hairstyle, KM Hairworks and Spa offers “An Experience Above All Others” with this haircut certificate. 

Value:  $35.00

Item 25

Whether you want a completely new look or want to maintain your current hairstyle, KM Hairworks and Spa offers “An Experience Above All Others” with this haircut certificate.

Value:  $35.00

Item 26

Whether you want a completely new look or want to maintain your current hairstyle, KM Hairworks and Spa offers “An Experience Above All Others” with this haircut certificate.

Value:  $35.00

Item 27

Whether you want a completely new look or want to maintain your current hairstyle, KM Hairworks and Spa offers “An Experience Above All Others” with this haircut certificate. 

Value:  $35.00

Item 28

Whether you want a completely new look or want to maintain your current hairstyle, KM Hairworks and Spa offers “An Experience Above All Others” with this haircut certificate. 

Value:  $35.00

Item 29

Print, Scan, Copy, and create Photos with this Epson CX8400All-In-One Printer.  Donated by Office Depot.

Value:  $100.00

Item 30

Securely tie down your ATV or Motorcycle with these Pro Honda 1200 lb tensile strength tie downs.  Donated by Sports City (Jacksonville, IL), these two soft straps feature vinyl coated S-hooks, 5.5’ long x 1” wide webbing and white zinc plated cam buckles with the Honda logo.

Value:  $15.00

SORRY NOT TOO MUCH ELSE TO ADD…I’M SUPER SUPER TIRED TONIGHT :O)  I’LL TRY AND POST AGAIN BEFORE THE BENEFIT WITH MORE HAPPY UPBEAT SOUND K?  LOVE TO ALL AND PEACE OUT!

Great news from today: the pathology report came back from the surgery (they sent everything to be looked at to make sure they got all the cancer out).  The verdict is they got it all!!!!!  All the margins were clear meaning that the outside cells had no cancer so they took enough extra from around the tumor.  In addition they took a lymph node just to make sure there would be no spread through the lymphatic system and it was clean.  Finally, and the best news for this type of cancer, the tumor itself was over 90% necrotic!  Basically the tumor was a dead lump when they took it out meaning that the chances of it coming back or spreading further is seriously reduced!!!!!  YAY!  God is sooo good and so faithful, I haven’t been able to stop smiling/happy crying all day   We still have three more rounds of chemo just basically as a cautionary measure but then we should be done with this.  Hopefully by Thanksgiving!

I just thought I’d share the joy with everyone!  We’re having a party to celebrate.  It’s September 6 at the Eagles Club in Riverton ;o)  No really, I’m serious, it’s gonna be a party!!!!!   I mean of course it is, I’ll be there ;o)  We’re gonna SELL EHHH BRATEEEEEEEEEEEEE!!!!  Come on out (Speaking of which, if you can’t make it, or even if you can, and you’d like 50/50 tickets or raffle tickets (we’ve got some great giftcards to give away ) ) let someone know!  Kara has a bunch to sell (her info is karahood@gmail.com) and my daddy has some (kylyjo@royell.org).  Other people do to or we can find a way to get them to you.  Cost for each is $1 per ticket or 6 for $5.  Winners for both announced at 8:00 pm on September 6 and you need not be present to win.  Just make sure on the ticket to put your address so we can mail any prizes you may win

Love to all and peace out!

Ok so I’m bad at this I know!  But I did want to share some good news from today.

1.  I’ll be able to go to my h.s. reunion this weekend as long as PT and I can get me into a car by then Usually there is a back log on homebound PT but they squeezed me in so yay   The Dr. gave permission this morning as long as I only go to the dinner and right back   (btw I was officially released from the hospital last thursday on a homebound status b/c well moving is something of a major challenge right now…most times I FEEL fine (although I have two positions only, laying down on my back or sitting up in one position which gets very physically uncomfortable after a week or so) but it’s frustrating not to be able to move b/c I’m trussed up like a Christmas Goose.  I did manage to go to the bathroom all by myself today YAY!)

2.  TT the Dr. and the spot on my lungs that shrunk and they thought if it shrunk it would indicate it reacted to the chemo so it’s a metastasized spot?  Well they think now that there’s no reason to beleive that b/c I also had such high dosages of antibiotics so they think they could’ve shrunk it…so right now we’re still treating me as not having metastasized   YAY (I have to be honest and say there’s a little voice in the back of my head going ummmmmmm maybe just maybe they’re wrong but as I’ve committed to living in the “what is” world and not the “what if” world I’ll worry about that little voice, if i need to worry about the little voice, when the time comes)

3.  And the big news…the approved my Long Term Disability.  YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  it’s still only 60% of my earnings which we all know weren’t great to begin with, but it’s still better than the 0% I’ve been getting since the last week of June.  It couldn’t have come at a better time.  I should see July’s payment sometime next week I hope.  I need to pay my car payment, car insurance, and well food has definitely been an issue here lately (though you’d be suprised at how far $3.23 (all we had) can go at Aldi…we found out yesterday and it’s pretty far =) =)…)  God is sooo great and always provides that which we need.  I have a tendency to forget that sometimes and I really need to work on remembering his faithfulness!

Anywho, there’s the quick update.  Miss ya’ll!  Come Visit (and if you can’t come visit, at least come to the benefit on the 6th!  I really want to see everyone, that’s what I want most out of this benefit…if all you can do is the $5.00 to get in the door and no more, no biggie…I just want to see everyone!!!!!!!!!!!!!! 

Love and peace out everyone

Home again Home again   yay   I’m home again   Ok so here’s the low down…Kara’s post from this morning very accurate…the procedure for putting in the filter wasn’t horrible though it was the fact they didn’t give me any warning and therefore afterwards, when I couldn’t move for 4 hours, I had to pee really badly…THAT was the really bad experience and then it opened the wound trying NOT to pee etc….bad times I’m telling you but GREAT nurses, very caring, understanding and patient   Anywho…home now in fairly significant pain but managing…couldn’t get into the car so they had to bring me home in their ride thing…home health nurses will be coming by to check on me regularly and help with OT and PT (occupational therapy and physical therapy) and then I’ll go see the doc at 1:00 pm on September 5th for a reevaluation to see where we go from there.  Until then, I can’t really do much.  No shower, baths (sponge only), no removing the brace (I’m in a full leg brace) that type of thing so…we’ll see how quickly I go stir crazy huh?

Well, again, I don’t know when she’s going to get out, but I thought I’d do a quick update.

They took Jo in last night and did another surgery, this time to put in a filter for the P.E.s.  It was all very quick.  Mom didn’t even have a chance to call me about it until she was in the surgical waiting room.  Jo had a REALLY rough time right after that.  Apparently this was the worst procedure to date… They went in through her LEFT thigh to do that surgery which means she now has both legs immobilized at the moment. 

Reason for surgery:  she was/is still bleeding out from the first surgery, worse yesterday than in past days.  Surgeon wanted to take her off the blood thinners; oncologist said too risky with her high risk for PEs; they compromised with this surgery and a lower dosage of the blood thinners…

Let’s see… they still don’t know what initally caused her RBC to drop so rapidly, so they don’t know if there’s the chance that the same will happen with the new blood… 

and that’s what I know right now.  I’ll try to update as I know more…

Kara

Hey ya’ll…I figured out how to circumvent the “blocked” aspect at the hospital so I can post updates here for ya.  We thought we’d be out of the hospital today, but that’s not going to happen.  My RBC’s fell critically last night so we just got done with a transfusion to get those up.  We’ll check my blood again around 8 tonight to see if that worked.  I’m really really tired and a lot more sore today than I was yesterday.  I’m told this is very normal that now that the anesthesia has worn off I’d start to really feel the incision and pain in my leg…yeppers that’s definitely true.  That’s about the update.  I can still get up and go to the bathroom etc and still move, it just hurts a lot more today than it did.  I’ll update everyone if anything changes but as of now we won’t be getting out of the hospital til tomorrow at the earliest.  Peace out and love to all.

Well, if you want to see an update from Jo, check the comments from the last post.

As of right now, we’re not sure she’s going to get discharged today (like was planned).  She did finally get a tiny bit of sleep last night b/c they had her on an oxygen tank while she slept.  But they HAVE figured out that her oxygen drops b/c her hemoglobin is super low (red blood cells transport oxygen through your body).  They’re not sure WHY it’s low, but they’re giving her a transfusion right now.  Hopefully that will help, though it won’t explain what’s going on with the blood.  So I imagine she’ll be in there at least until they figure out what’s wrong and if it’s safe for her to head home

I’ll update as I know more

Kara

Sorry it’s taken me awhile to get an update up, all.  Both of the computers I’ve had access to today have decided to be excruciatingly slow

Anyway.  Johnna’s surgery went fine.  No complications.  We won’t know what the margins are yet until the pathology’s back and that will be a few days, but things looked pretty encapsalated during the surgery, which is good

Let’s see.  She’s in a lot of pain and getting a ton of drugs for it   She’s in room 411 (4B wing) and will be at least through Wednesday afternoon, we’re not sure yet when exactly she gets to go home.

I think that’s it for now.  Thanks for your prayers and support.

There are a few of us going out on Tuesday night (tomorrow) to solicite donations and ask business to post flyers about the benefit.  If anyone wants to join us, please let me know

Love

Kara

Ok kids this is it…12 hours and counting…I have to be at admitting at 10:00 am tomorrow morning for my surgery…still no word yet as to what the surgery will entail…they tell me I’ll find out tomorrow morning…I just know that I keep having horrible nightmares of waking up during the surgery sooooo I’m freaking out just a tad bit over the whole thing…anywho…I’ll have Kara update how it went tomorrow night/Tuesday morning…peace out and love to all.

So the SJ-R wrote an article about Kara and I.  See it here.  Not much else to share right now.  Feeling ok this week I guess…a lot more tired than normal.  Surgery still scheduled for Monday.  Miss you all   Love and peace out!

http://www.sj-r.com/homepage/x1600193619/Dave-Bakke-Twins-don-t-need-to-talk-to-keep-in-touch

Well, Johnna’s surgery is ONE WEEK AWAY and we’re trying to get as much for the benefit organized and wrapped up by then. But we need help!!!! If anyone is available and/or willing to help out with the following projects, please let me know!

Kara

Project 1: anytime August 4th-August 13th: Solicit donations for the silent auction, etc.

We have packets to make this easier and a list of businesses that we still need people to go to.

Project 2: Follow-up: August 14th:

Follow up with those businesses that others have contacted. We need advertisement copy by the 15th.

Project 3: Decorations: Thursday, August 28th and Sunday August 31st 6:00-8:00 pm

Help make the party decorations

Project 5: Pick Up Silent Auction Items

Afternoons/early evenings the week of September 1st-5th.

Project 6: Set Up: Saturday, September 6th

Help with Set up for the benefit

Project 7: Food: Saturday, September 6th

Help with Food for the party

Project 8: Shift work for the benefit. Various times 4:45-10:30, Saturday the 6th

We’ll need various people to help keep food replinished, sell tickets, watch over the silent auction, etc. during the actual benefit.

Hey everyone doing better today…went to the doctor…i have bronchitis…go figure…good news is breathing treatments are really helping me to feel much much better   Still coughing but not so much that I can’t function and today I actually feel like I can breathe when I’m not coughing which is a huge improvement from Tuesday, Wednesday and Thursday   Not much else going on…still trying to figure out what’s going on with the surgery…they called me on Monday to confirm and preregister and had me down as outpatient surgery…now for those of you who don’t know they are taking a LARGE chunk of my leg out…I’ll have a scar basically from my hip to my knee and they may have to take the whole front muscle group once they get in there and try to get negative margins…(quadriceps I think b/c hamstring is back I believe but don’t quote me on that as anatomy has never been my strong suit)…anywho so they had me down as outpatient and I’m thinking ummmmm okkkk is that right?  The nurse was like well that’s what they have you down for but I’ll check…so she got back with me and nope it’s supposed to be inpatient (suprise suprise)…so then I get the forms from the preregistration and it says “resection of right thigh” (which is right) then it says “with brachyatherapy” which is a form of radiation where they put a bunch of tubes (cathetars) in your leg during surgery before sewing you up and then wait 5-7 days and then insert radioactive little “seeds” kinda through the tubes for several days (up to 72 hours straight) after to get anything that may have been missed (if you want to see a picture click here, WARNING but you may not want to..it’s really gross but for the morbidly curious it’s images 4 and 5 about 2/3 of the way down the article)…It’s really helpful and needed when you can’t get negative margins…HOWEVER, we discussed this with both Dr. Allan (surgeon) AND Dr. Nanavati (Radiation dr) because my clinical trial says you can’t do brachytherapy (it’s too new itself so can’t be in the clinical trial) and BOTH of them said they were “confident” that they could get negative margins without it so no big deal…but now my paperwork says they are doing it…don’t get me wrong…i’ve said all along that if it’s in my best interest to do something the clinical trial won’t allow fine I’ll just quit the trial…but come on people I’D like to be involved in that decision if it’s the case…so we’re trying to get that figured out…so basically the only thing they’ve had right with setting up this surgery so far is that my anesthesia is to be general and not local (duh!)…makes me not so confident in this whole thing!  It’s very frustrating when there are so many different doctor’s involved that the left hand doesn’t know what the right is doing…

OMG which reminds me on monday when we went in to check the blood counts we FINALLY saw Dr. Rao for the first time since he’d come back from vacation…which means that it was the first time we’d seen him since ROUND TWO of chemo back at the end of may…he stopped us in the hallway as we were leaving from seeing yet another person in his office b/c he “wasn’t available” and he asked so I heard a rumor we’re doing surgery on August 11th and we were like yeah that’s what Dr. Allan and Nanavati scheduled and he was like ok so are they going to be able to save your leg or are they planning an amputation??? I have to tell you this threw my head into kinda shock b/c I’m thinking um have you seen my chart?  what do you mean amputation?  From round 3 we’ve always known we were going to resect (and that was way back at beginning/mid june) even if it doesn’t shrink…Dr. Rao was like can they do it if it doesn’t shrink? (and note we haven’t done the scans to see where were are, but it definitely has NOT shrunk by sight…we’re just hoping for a lot of necrosis at this point…dead cells) Now it may just be b/c he’s NOT a surgeon but let me just say that between that and all the mixups going on with planning the surgery I’m kinda ready to crawl into bed and not emerge until oh I don’t know the new year?????  Anywho…thanks for listening to me rant!

On good news, my niece is the most adorable 20 month old ever and I love her to death.  Even though I’ve been sick I have a hard time resisting her and she loves to just cuddle up in my bed with me and read or watch disney princess movies (she’s obsessed with “rella” and “belle” every princess is either “rella” or “belle” depending on blonde or brunette LOL) or sometimes just stare at each other and point out facial features (nose, eye, mouth etc)…and she’s soooo cute…when I hack up a lung she yells from wherever she is “Jo…you k???” and if we’re in the same room she comes running and hugs me while saying “jo…you k???” she is such a lover   She’s also cute in that she yells “bless you” to whomever sneezes in whatever room they’re in   She keeps me sane and reminds me “it’s all ok” even when she’s being a fuss bucket

Ok well I think that’s it for today.  Love and peace out to all!

sorry it’s been so long and this’ll be short.  I caught a summer cold (go figure…the irony is that life threatening illness I can handle…sore throat, runny faucet nose, cough from hell…not so much big baby when it comes to those three!!!)  Anywho, that’s the update right at the moment…in bed being miserable with this cold and hacking up a lung everytime I move so i don’t move much…hopefully will be better soon.

love and peace out to all

Spoiler Warning…going to discuss the end of the movie here…if you just want an update scroll down

So I rewatched (for like the millionth time) Under the Tuscan Sun a couple nights ago with mama.  Ya’ll know me, I’m more of a Die Hard, Indiana Jones, Lethal Weapon, X-men, LOTR movie girl so finding a “chick flick” that I enjoy is usually pretty difficult.  I think there’s prolly only 20 of them ever made.  And Under the Tuscan Sun is right up there at the top of my list.  I love it.  Sure the middle is a little slow but it’s portraying her life moving on from what she thought would be the end of her life, it’s going to be slow, and painful, and awkward and difficult.  Sure I’m a bit bitter towards the movie at the same time as loving it because well quite frankly, while it sure wasn’t easy to get her life back in order and be happy again, it was definitely made easier because she didn’t have to worry about money (I’m beginning to think it’s an impossible task when you’re bank account possesses nothing but fat eggs laid by geese).  But that bitterness aside (and really it’s a fleeting bitterness because the end message of the movie is so remarkable) it is a remarkable movie.  Let me just share just three (granted it’s a big three) of the reasons I see this to be true.

1.  Talk about a lot of instances about the community coming together to help each other out.  Often times these coming togethers include total strangers just lending helping hands because very little can be done by one man alone.  I love it

2.  The ladybug story.  Katherine’s (eccentric lady with the hats and dancing in the pool) tells Francis a story about how she would waste so much time as a child searching for ladybugs in the grass.  She’d never find any and would give up exhausted and fall asleep in the grass.  When she woke up, ladybugs would be crawling all over her.  This isn’t a new concept.  I can’t tell you how many times I’ve been told, “if you stop looking for BLANK, BLANK will find you”.  Insert any concept for BLANK you want, love, success, fame, fortune etc.  The funny thing is, I’ve seen it played out in real life so often it’s pathetic.  It works, yet I see so many people get caught up in the chase that they fly past what they’re looking for because they’re chasing so fast and so hard.  On the road of life, you should take the scenic tour, not the interstate.  It’s a great message and plays into number 3, the ending of the movie.

3.  The end…seriously the end is probably my favorite ending of all time…bold statement I know…but I’m serious.  So we have the end where Pawel and Chiara are getting married and Patti and the baby are there and Martini points out to Francis that she got her wish, it’s an eye opening experience.  Earlier in the movie she had wished for a wedding in that house and children in that house and she didn’t see how that was ever going to be possible.  Now we all know she was meaning her wedding and her children, but the fact that she was able to open her eyes and agree with Martini that she did indeed get everything she asked for and everything she wanted, just not in the packaging that she expected it to come in is a great great great message (and of course right after she sits down and closes her eyes content with her life and where she is and omg if you can believe it actually happy!!! and when she opens her eyes because cute american talks to her she sees a ladybug has landed on her ohhh and the man of her dreams as well…note deciding to stop looking usually doesn’t work that fast, that was a bit disappointing.  I mean I’m all for Francis getting a guy but at the same time it sort of diminishes the awesomeness of the first message)!  If we could all just open our eyes, take off our blinders, take the scenic route and not the interstate and stay open minded enough to allow for detours, what we’re looking for just might find us.

Ok well enough of my random ramblings about movies   Update…I’m no longer neutropenic yay   My ANC/WBC are still low but instead of 1/4 where they need to be they’re at a little over 1/2 so that’s great   My RBC and platelets went down since Wednesday though   Not drastically, just down.  We’ll go in for more blood work on Monday and see where we are then.  Took a while at the doc’s office today b/c apparently I had no orders and my file is messed up or something like that, but hey what do ya do.  At least I had a book!

Ok I think that’s it for today.  Love to all and peace out

Let us know if anyone would like the following postcards to distribute to those they know or flyers to hang up to advertise the benefit.

Ok well here’s the scoop peeps…I’m neutropenic, which basically means my immune system (white blood cells and ANC) is so low right now that I’m at risk of developing a serious infection…soooooo I’m pretty much hybernating until that goes up (the neulasta shot I had last week should kick in sometime this weekend hopefully and get that count up again)…so until then I’m going to the doctor tomorrow and Monday to do blood work again and that’s probably pretty much it until the counts come back up b/c quite frankly I don’t want to be in the hospital again!!  My other counts are low but not critically low, just normal cancer patient level low.  In other news I’m feeling a bit better today…about 70% and since I’ve been at about 35% up until today that’s great for me   It’s taking me a lot longer to bounce back from this round of chemo than previously which my doc says is normal so not to worry.  I do need to bounce back soon though b/c I have way too much to do (i.e. solicit donations for silent auction, get down to DHS in person since they don’t answer their damn phones EVER, get to the Soc. Sec. office and the list goes on).  I also need to bounce back so I can start trying to get some of my stamina back before surgery.  I’ve spent 14 of the last 33 days in the hospital and of the 19 days out of the hospital 9 of them were still spent pretty much in bed recovering from chemo so out of 33 days I’ve had 10 days where I was up and moving.  Needless to say my body is suffering.  I have no stamina at all.  My legs have lost most of their muscle and are resembling chicken legs.  So my doc wants me to start (as soon as my counts are good enough, not before) to walk at least 1/2 hour every day so that come surgery it won’t be so hard to recover.  However I can’t do that until my counts come up sooooooooooooooo…sigh!

Anywho, in unrelated news.  I’d like to give a huge shout out and thank you to the anonymous person who is leaving $1.00 per paycheck (we can tell based on deposit dates ) in my benefit fund (the Johnna Hood Benefit Fund at ISPFCU in Springfield, IL)!!!!  This is wonderful and a GREAT idea.  Everyone else, spread the word, and I’m being serious here not facitious, I’m staring the “$1.00 for Johnna Campaign!!!!”.  Think about it, a group of people, let’s call them a community of people actually, all donating $1.00 per paycheck in support of one woman’s fight against cancer!  It sends chills down my spine thinking about it really   Such a small thing for such a large impact!  Seriously, I invite all of you to contribute to the $1.00 for Johnna Campaign and spread the word!!!!

Finally, today I leave you with a great quote I just read on one of my support group boards.

Remember…Don’t tell God how big your storm is, tell the storm how big your God is!

Love to all and peace out!

Ok well this post is mainly to keep my mind off the fact that I feel crappier than I can ever remember feeling in my entire life…apparently chemotherapy is a progressive drug…more effective as you go…and apparently also the side effects grow as you go…no new side effects but seriously kids I can’t remember a time I felt crappier!  Anywho, we are home from the hospital and I’m desperately trying to keep my mind on anything other than how crappy I feel so per request I thought I’d fill peeps in on the benefit.  Of course the benefit is to benefit well me and my family.  As you all know I’ve been off work since this started due to the agressiveness of treatment and limited mobility I have.  I’m going to be off work probably through November my doctor says.  July 1st I found out I no longer have a job to go back to (which increased my bills b/c cobra is ridiculous people really ridiculous!!!!)…my long term disability is on hold for “administrative review” which legally can take up to 45 days!!!!!!  mama has been staying with me and not working so finances are tight to say the least.  Anywho, the benefit is to help offset some of these costs (ya know the basics food, rent, insurance payments, copays, etc).

Date:  September 6, 2008

Time:  Food from 5-7ish pm (fun family time with games ) 

           Silent Auction from 5-8 pm (need not be present to win)

           Dance with DJ from 7-11 pm (more adult oriented party…must be 21 to drink and must designate a driver)

            50/50 raffle, “big item” raffle, silent auction winners announced at approx. 9 pm

Place:  Eagles Club

           1146 E Lincoln st.,

Also, if you have some gift cards you’d like to donate for door prizes, let myself or Kara know

1. Business Card Size–$10.00
2. ½ Page Layout–$25.00
3. Full Page Layout–$50.00

Ok well I’m sure I forgot something but if I did I’ll let ya’ll know   Peace out and love to all.

Date of Surgery

Thought some of you may want to know that

I’m liking the symetry of the 11th.  First went to doc on Feb. 11.  Diagnosed on April 11.  Getting out of hospital from last pre surgury chemo tomorrow (July 11) and surgery on August 11 (yay…a full month off not just 2 weeks off ).

Anywhoooo still in the hospital getting ready to start the last bag of chemo before surgery (YAY I feel like we should have a parade)…all is going ok…having some hiccoughs issues but we have medicine for that here at the hospital so that’s good   Otherwise all ok here…little naseaus…little tired…but hey it’s chemo, par for the course and not bad overall

peace out and love to all

That’s the room I’m in   We had to come in yesterday (a day early) because I had to get a transfusion (two bags of red blood cells) b/c my hemoglobin was at 7.8 yesterday morning and falling (7.2 yesterday afternoon).  So now we’re going to start chemo today (the transfusion helped my count up to 9.2 so…) Anywho that’s the update.  Not much else.  Still trying to get things together for the silent auction for the benefit on September 6, 2008.  If anyone either HAS anything they’d like to donate for it or knows anyone who’d like to donate for it, please let me know by August 8, 2008 (gives us time to put together the program).  Also if anyone would like to advertise in the program, let me know  

Guess that’s it for now.  Doc’s coming in so peace out and love to all

I suck apparently at keeping everyone up to date!  This update is prolly going to be short b/c  lots has gone on in the past couple of days that have quite frankly been totally emotionally draining (and at some times emotionally debilitating) on me so that’s why I really haven’t taken the time to update, too much effort to sound ok.  I’m here…we left the hospital about 2:30 or so Sunday afternoon.  I feel ok except for the coughing from the PE’s.  Unfortunately my counts are pretty low so we go into the doc tomorrow to get them checked again.  If they’ve gone up we can do chemo next week but if they haven’t we probably can’t (the counts are just that low) but for low counts I feel pretty good.  That’s where we are right now.  I know I still need to post the responses to and from the top 5 challenge and I promise I’ll get to it, but I have a lot of things I need to get done in the next couple weeks (lots of paperwork b/c I no longer have a job though we’re fighting for LTD, but I need to meet with IDPA caseworker, hospital caseworker, Cobra insurance people, paperwork for SSI…yeah I’m totally overwhelmed by all of it but it’s got to be done)…unless you hear otherwise, please assume I’m ok…if you’re worried or haven’t heard from me in a while here go ahead and give me a call   I love phone calls   trust me you won’t be disturbing me if you do call.  Ok that’s it for now.  Peace out…love to all.

Ok so here’s the deal…we were told this morning that everything was looking good yay i’d get to go home and get to Sarah’s Bridal Shower!!!!  Then about 10:30 the 4 docs (1 attending and 3 residents) came with the bad news…my platlet counts are down and falling rapidly…this could be a result of either the chemo OR the lovenox so they have to keep me for observation (which means they did NOTHING else today and will just take blood tomorrow) and take more blood tomorrow to see what the counts are doing…they didn’t say much else b/c well frankly i’m sure i looked like i was going to lose it and i did as soon as they left and boy did the hospital staff avoid me after that…of course EVERYONE from housekeeping to the doctors knew i was looking forward to the shower and leaving the hospital today (i even had a doc shed a tear over it)…BUT good news is that even after that it was still an awesome day for various reasons.

1.  Small group girls brought cookies they had baked with the jr. high girls yum

2.  Adri and Sharah both came right away and the three of us (who haven’t ALL been together in the same room since Riley’s 1st B-day party back on Dec. 30, 2005!!!!) sat in my hospital bed (yes all three of us together in 1 hospital bed ) and talked for like 4 hours…just like we used to when we had time and before kids and different jobs and husbands and life getting confusing!!!!  It was AWESOME…Best time I’ve had in I can’t remember how long even if it was in the hospital.  I love my friends!

Anywho, the scoop is that we’ll draw more blood in the morning and test the levels…if it’s above 90,000 I’ll get to go home tomorrow and just followup with the doc on Monday.  If it’s below 90,000 they’ll keep me for observation (i.e. another day) to see if it goes down again.  Same rules would apply to all subsequent days as necessary and if it were to go below 25-30,000 then we’d have to do a blood transfusion.  So basically still in a holding pattern.

That’s what I got for today!

Peace out and love to all!

Ok well I’m still in the hospital (G408) but hopefully will be out tomorrow.  As Kara updated you all, Wednesday afternoon my “heartburn” started to spread to my left chest and arm really bad so we went into the ER where it turned out I had a larger pulmonary embolism (PE) in my left lung and a smaller one in my right lung…not fun let me tell you…update is this…hopefully should be out tomorrow morning…they had me on heparin to start with but have switched me to lovenox shots which I’ll have to continue at home for anywhere up to a year (kinda like insulin shots in that I’ll give them to myself subcutaneously (under the skin) in my tummy every day).  I’m hopeful that when they do the blood work today that my counts and everything are ok enough to send me home tomorrow morning (I have a wedding shower I don’t want to miss).  I’m feeling much better today than I have been…though I’ve developed an annoying cough which I’m told is normal with PE’s.  That’s the update I have and pretty much all I got  

Love to all and peace out

Ok so last night was awesome.  Kara wanted Avanti’s so she, I and Elizabeth (the unquestionable…albeit reluctant…road trip queen) piled into Elizabeth’s Prius and made the short trip to Bloomington for Avanti’s.  It was great Good food (of course) but even better company   Girl talk all the way up and back and then we played this awesome game while we were waiting for our food that continued through the food and through the entire time we were there.  The best part is that our waiter and the manager on duty last night were also playing the game with us. 

So the game goes like this.  One person thinks of a category…Kara was first last night and her first category was Top 5 things to grow in a garden…then everyone writes down 5 things that they think everyone else will also write down…we had a BLAST…lots of random categories like top 5 novels read by high schoolers, top 5 actors under the age of 35, top five tourist cities in the us, top 5 news stories in our lifetime (we were all 26-30 so pretty much same lifetime), top 5 sports franchises of all time…I mean it was just fun and a blast and I don’t think I can express how enjoyable it was.  Especially given the fact that the waiter and manager were quite frankly hot (one in a preppy, clean cut way, the other in a rocker, touch of bad boy way)…no overt flirting (which is amazing…ever notice how sometimes attractive male waiters will purposefully flirt with a table of women on a girls night out type thing just for a bigger tip?  that usually annoys me but it wasn’t at all like that last night…it was just fun )  The manager would come up with his top 5 and insist it was the definitive top 5 list and had some snappy comebacks for our comebacks…like I said hard to describe in words but fun   Some memberable quotes from the night

1.  Kara:  We were asking for top 5 film trilogy’s that were originally meant to be trilogy’s (regardless of if they have new sequels or prequels now)!!!

     MOD’s comeback:  Well I originally meant to have only 1 child and now I have 2 does that mean I’m still only a father of 1????? 

2.  Category is top 5 non-alcoholic beverages and we can’t stop laughing b/c Kara has only brand name of soda’s listed that’s it LOL

It was all just a blast.  And in honor of the night I’d like to post two categories.  Please send your responses to me via email (so we don’t know what everyone else’s answers are until the end of the challenge).  My email is johnnahood@gmail.com

Categories are

1.  Top 5 most well-known Movie Soundtrack songs of all time (these are songs with lyrics people…songs that were hits but were written for or used in a movie in such a way that most people identify the song and the movie)

2.  Top 5 most identifiable movie soundtrack themes of all time (no words but if you were to play or hum a few bars of the the theme most people would know excatly what movie it was from)

The challenge will end Friday evening at 5:00 Central with answers and scores posted ASAP after that time!

Good luck everyone!

Ok well all is ok here.  I’m doing well.  I don’t know if I’m becoming more accustomed to the side effects so they seem less or what, but really everything’s pretty normal for a post chemo weekend.  I’m nauseous, tired all the time, and feel like mike tyson crawled inside my body and pounded all of my bones into mulch, but otherwise I’m good, and on a scale of 1-10 I’d say I’m only at a 5 of crappiness which is a vast improvement from last time’s 9 on the scale

In unrelated news, the guy who farms the land around our house ran over our well severing the PVC pipe and lots of wires so currently we’re without water.  Never a dull moment

Love to all and peace out

Do you like the title?  It’s the name of the ADORABLE stuffed pig my housekeeping staff worker bought me this morning.  That’s right…the housekeeping staff worker.  Her name (the housekeeping staff worker) is Angel and she’s fantastic!  Fun, personable, cleans really well.  Today’s the first day I’ve met her but she’s wonderful.  We’ve been incredibly blessed this stay.  All the staff and workers have been wonderful   The RN’s have been wonderful.  Everyone’s been listening to me and communicating well with me (except for one doctor but that’s ok b/c I just refuse his ideas…i.e. he told us that if my blood sugar went over 200 this go around that we’d have to start insulin shots…well it went to 178 yesterday and the nurse tried to give me an insulin shot and I refused it (it’s wonderful knowing my rights )…anywho, even if it goes over 200 I’ll refuse it…for goodness sakes it was over 400 the first time we were here and as soon as I got off the IV it went right back down to it’s normal range of 80-100.  I don’t want to be come insulin dependent so we’re not doing it)…but otherwise everyone has definitely been communicating better with me.

We talked with Dr. Allan yesterday and he feels everything is going well and on schedule for him to do surgery.  In fact, he said yesterday that if we had to surgery today he could successfully remove my tumor (w/o removing the leg) and that he had just successfully done a surgery removing a tumor even bigger than mine so it’s very good and very encouraging news.

Round 3 of chemo is def. winning the race for best round of chemo so far.  Must be because we’re only doing the ifosfamide and not the doxyrubicin/adriamyacin (same thing diff. names).  I’m awake and lucid this time as opposed to sleepy.  I’m still eating as opposed to turning away all food.  I’m still peeing like a russian racehorse but hey I can deal with that.  There have been a couple of kinks in this visit, but b/c it is round 3, mama and I are both more comfortable saying “WAIT, Yellow light, pause what’s going on?” and since it is round 3 and we know exactly what should be being put in my body, when, and why (I’m telling you communication is the key to getting better where I’m concerned) we know how to be our own advocates and nothing’s been messed up this round so no terribly sick (I did get sick first night when they started the chemo we’re not sure why but Jessica, my chemo RN at the time responded quickly and I felt better really fast so we’re not sure why that happened and consider it a non incident).  Anywho, bottom line is all is well, well as well as it can be when you’re getting chemo, which is surprisingly well

Love to all and Peace out

P.S. People check in with me and let me know you’re ok…Tara, haven’t heard from you in a while…Aunt Sue, ya’ll ok up there????