Life In The Real World

[PrincessFiona]

My grouchines continues.

Honestly...we survived residency, fellowship, two international moves and tons of 'regular' moves...but I just lately wonder if we Thomas and I can ... get through this anymore. Actually, lately, I'm wondering if I can just get through this anymore. I'm tired.

We have done fine until recently, but the 'novelty' of this whole cancer thing wore off a long time ago and it's gotten harder for me to function like I used to. Up until recently, I was still able to take care of things and...I had my mom or my dad/rose around to help...but the exhaustion is lasting longer as is the mental apathy I feel...sad, I know. It's just harder for me on all levels to rally myself...even though I know this next chemo is my last. I've been told to expect the tiredness to continue and that radiation can really exhaust you...also, I've been told to expect radiation to knock me down for the duration plus...another month.


I just am already dreading 4 weeks of radiation. I have woken up several nights worrying because of the location of the remaining tissue (between the lungs at the aortic...root?). I keep wondering what will happen if I breath during radiation if I'm supposed to be holding my breath or...ok...this is silly...if they tie you into some contraption to hold you still or if it is some claustrophobic tube structure or something. Obviously, I just need to get the first treatment over with so I know. I just keep worrying that they'll burn my lungs or my heart or my aorta or...I don't know. I know it seems ridiculous, but....it also feels plausible.

Also, the self-doubts have set in about handling a newborn with whatever issues may arise in terms of prematurity, etc....I can barely get things done around here now. It was a huge effort for me to fold two loads of laundry and load the dishwasher this morning. Maybe I'm just getting lazy and I'll actually rise to the occasion....I also probably won't be able to breastfeed and so I wonder how I'm going to manage multiple night-wakenings with a newborn with a teeny tummy. Breastfeeding is so frightfully easy! The milk is there, ready, the right temp/mixture. How am I going to make bottles in the middle of the night AND get the kids out the door to school AND function with a 2 year old and a newborn during the day? I'm afraid that I'm going to fall apart...I really am. Sadly, I might be falling apart already.

I've never worried like this before bringing a baby home...I always experienced the newborn stage as the easiest time of parenting....one of my favorite times, actually. I love nursing the baby, holding it during the day, bathing it..changing it...everything about mothering a newborn....Now...I just feel like I might be in over my head.

I feel tired all of the time...and then there is this blasted prednisone.
I woke up at 3.45am this morning and have been up since then. It's only noon, but it feels like nap time to me...except...thanks to the prednisone my eyeballs are practically glued open...though I feel exhausted.

Thomas just seems to not understand and he blames all of my irritibality, etc on the 'prednisone' . He doesn't see how he is contributing to the problem at all by having so little understanding. He jumps back and forth between being nice and being...well...aggressive. I know he's struggling too...and I don't blame him really. He has had to shoulder a lion's share of the responsibility over the last couple of weeks and things haven't let up much since I got home....

I just really don't know how much more of the stress any of us can really take anymore.

Funny...now that we're nearing the tail end of all of this, huh?

kris

[PrincessFiona]

Yesterday was a beautiful pre-spring day. We went out with the kids in the backyard for nearly 2 hours....and then let them stay out in the back until after dark. Even Aidan was out there trying to keep up with all of the running around. Thomas and I started planning how we were going to plant the veggie garden this Spring and we cleaned up trash that had blown over onto our little piece of the pond.

This summer is going to be a lot of fun for the kids. I can't wait to get the gardens all going...and they are excited to be able to fish off of the dock and play on the swing/slide etc that we have out here.

Here is the view from our dock this Fall when we were getting ready to move in:



a view of our deck and the play area we had built under it....you can see the slide, but underneath the deck is also a ring/trapeze thingy and a swing!



note crazy neighbor's house right next to ours!

I got the 'all clear' this morning from my ob to head over to our local hotel with play area/pools/ for a few days. We're checking in this afternoon and the kids are really excited. I am too. It will be nice to just get away.

The baby is measuring...large...my ob says the prednisone must be giving the baby the same little weight boost it's giving me. :> In any case, she said that I was measuring at about 33 weeks even though I'm only 30. We're doing another 4 quadrant amniotic fluid u/sound on Thursday and I see the perinatologist on April 4th. At that point, she wants to decide whether or not to deliver at 32 weeks before the last chemo or...to make it to 34.....

Off to pack...

kris[/img]

[PrincessFiona]

More pics before I take off...I just finished emptying out my digital cam, so here are some highlights from the last couple of months!


Andrew and Alex at the Blue and Gold Ceremony. Andrew officially became a boyscout!!!


Amanda hanging out at Alex's 7th B-day party! She didn't want to go in and play with the boys...ewwwww!


Thomas and the kids at 'Space Aliens' where we were all celebrating Alex's bday!


Grandpa Bob and Aidan at Space Aliens winning tickets! Grandma Rose is in the background.


A pic from my 4th round of chemo....I'm busy working on Zoe's blanket.


Thomas and I at Space Aliens...notice the prednisone 'boost' I've gotten.
.....oh...and the controversial wig. It's actually a long-haired wig, but I'm wearing it back in a pony tail. Thank Goodness for the hat I'm wearing from Alison-in-Ohio...it is the most comfortable thing I own for my head! I wear it every night to bed too!

Oh, hey...I'm wearing my med spouse sweat shirt too.

[PrincessFiona]

We had a nice couple of days at the hotel, but ...I'm glad to be back at home. 3 days with four kids in a hotel room with two double beds was....a lot! The kids had a great time swimming, playing and...getting on each others nerves though. I have some great pictures that I'll have to post!!! Aidan was fearless in the kiddy pool and was literally leaping from the sides and swimming like a...fish! Alex played with him for hours on end while Andrew and Amanda enjoyed their first opportunity to be unattended by me in the 'big pool'. It was 3-5 foot deep and I could see them the entire time from the kiddy pool (they just didn't know it :>) DH worked during the day and came in the evening for dinner and to spend time with us....then he went home to sleep...this way he could let the dog out, feed the cats, and....have some alone time. I think we both needed a break from each other and all of the stress...it did us both good.

Thomas broke his tailbone last week and has generally been unable to sit comfortably, etc...When he came home from work today he was so miserable that he just had to lay down on his stomach...and I got an ice pack for him to put on his...behind. :>

Life on my rollercoaster? My ob broke her foot and will now be out for the next 6 weeks. I can't believe it! I wonder what else could possibly happen at this point? I have yet to talk to her, but I have been told that I'll be seeing the OBs with available appointments...all men...all different...which I have a big issue with... I don't really have a choice now. Sorry if that is offensive to the spouse's here who have hubbys in OB...I generally speaking don't undress in front of male physicians....I just don't. I've heard enough rude behind-the-scenes talk to last me a life time and even though I know women can be just as rude...at least we have the same body parts. Also....ob/gyn stuff is just really very, very personal to me. DH would die a million deaths if he had no choice but to see a female for a prostate exam or something (actually, he wouldn't go)...and I feel the same way when it comes to 'female' exams. I know some people who prefer male ob's...it's all about personal choice. I just feel less akward undressing in front of another woman....

I don't like that in the middle of what has proven to be an emotionally charged and semi-complicated pregnancy that I'll now be tossed from doc to doc with little consistency...and no clue of who is going to deliver the baby. To top it off, my AFI this morning was 7.9cm That puts me back into the 2.5% for amniotic fluid levels...and though one pocket was 3 cm, the others were all well enough below 2. A tech did the u/sound and I have no physician to follow up with on this right now....DH basically thinks that no one has even looked at it and he is beside himself with worry and upset. "I can't take this anymore", he howled through the phone after looking at the usound results in my chart... So, I told him that there isn't much anyone could do besides watch it and put me on bed rest and to calm his nerves I went to Wal-Mart and bought 2 kid's movies for 11.00 and told the kids that we are all going to lay in mom's bed and be on bedrest tomorrow! It can't hurt, and God knows I'm tired enough to lay in bed all day Now I just have an excuse to lounge! :>

I have felt sad though for the last two days since learning about all of this...I can't really do anything to change it, so I have no choice but to accept it cheerfully. It just sux to have everything be so beyond my control right now. I'm used to being in the driver's seat...at least when it comes to most things in my life. I wish that Jodi was going to be able to be a part of the rest of the pregnancy and particularly the delivery. I know she must feel really badly too though. It's just sad to me....I had been thinking lately about how sad it would be when the pregnancy ended and we didn't see each other as often....I've been in her office every week...plus daily when I was inpatient...and we've talked on the phone a few times. I know that we'll still go out and grab a bite or have coffee occasionally when this is all over, but it will be different. I didn't realize this would be ending so soon.

When the baby is here and her foot heals, I have a feeling she and I will need to take ourselves out together for some good stiff drinks. I guess I'll have to cancel that purple pubic wig now....somehow, I'm thinking that a male ob who doesn't know me very well won't find the .... humor in it

kris

[PrincessFiona]

Relief, relief, relief!

I went in this morning for my u/sound an ob appointment with the new provider....and....he is quite frankly...awesome! Seriously, I was so impressed by him and so relieved that all of my concerns really just melted away. I would even consider having him be my primary gyn after this is all over. He is also going to cover me for the rest of the pregnancy so that I don't have to see other providers. I feel comfortable now that there will be some continuity in my care.

I only see Jodi for pregnancy stuff and otherwise don't go in for gyn care. I have no problem seeing Jodi for the pregnancy, but I prefer less of a personal friendship kind of thing when going in for routine care. So...this self-proclaimed "never see a male ob/gyn" gal just may have broken her own rule. This guy was awesome!

The u/sound was good...but now my blood pressure is elevated so he did some blood tests for pre-eclampsia and I have to do a 24 hour urine collection thing. They give you a 1/2 gallon-sized container for a 24 hour collection......obviously, they don't know I visit the restroom every 45 minutes! So...I asked for a second bottle, but was told to use a mason jar if I fill this one up....with one warning...to "wash it out before I use it". Apparently, they had a patient who used pickle jars that still smelled of pickle and she had to re-do the entire test. :! This should be interesting!

In any case...Level II u/sound tomorrow and blood tests/urine test will decide if we have baby before or after this next round of chemo which is supposed to be on Monday.

Hopefully, we'll be able to hold off until this round is over!

man...I'm so relieved!

kris

[PrincessFiona]

I own 6 bras...and this morning when I was trying to get ready for my u/sound appointment, I couldn't find a single ONE of them. It's true...I was 15 minutes late for my appoinment because I couldn't find a bra...anywhere. This is one of the results of having dh do most of the laundry. I am not complaining of course, but it is hard to feel so out of control and this morning's bra search nearly did me in. I finally had to call him and ask "Is there a laundry basket laying around her that I don't know about?"

Apparently, he'd been folding some clothes down in our finished basement while watching tv and that...is where all of the bras were. Crack me UP. In any case, I wasn't sure that they were even going to see me this morning because I was so late...but they were really cheerful about it. "What held you up this morning?" the tech asked. (I'm not usually late!). "ummmm....my 2 year old". What was I going to say? I couldn't find a bra?


I have had the chance to spend some time with my OB....she invited me over and I brought breakfast and some books...and...we've decided to just 'hang out' for a couple of times a week until she makes it back to work. So...that is all ironed out.

What isn't completely 'working' in my life are all of the appointments and various 'opinions' about baby/the pregnancy etc.

I went in Monday for biophysical profile and my AFI was back down to 7.9 (in the 2.5 percentile)....then I had a level II u/sound on Tuesday and it showed my AFI at 5.1 . When I kind of gasped over it, she did it again and it was 6.1 (better but still in the 1st percentile overall). So, the perinatologist came in...and basically told me that we weren't going to bother to look at the thin area on the uterus (AGAIN) and...that though the AFI was concerning, he wasn't too worried.

I asked if I needed to limit my activity again (last time, when my AFI was 6.9, I was admitted to the hospital, given steroid injectinos for baby's lungs and then later was put on modified bedrest). Basically, the answer was that I could just go about my life.

HUH??????

He said "we'll just watch it and if it sinks below 5 then you'll be delivered".

That was Tuesday. Today (Thursday) I went in for an AFI/biophysical and my AFI was ~11

HUH?????

I asked the tech about it....I explained that every time I came I had wildly ranging AFI's....she told me that many people don't turn on the doppler to check for the presence of umbilical cord and that you aren't supposed to measure umbilical cord...BUT...she DID turn on the doppler. That means that my amniotic fluid nearly doubled in a matter of days again? So she said that it was sometimes 'technician dependent'.

Then...what is the POINT of doing them if they are so inaccurate?

She suggested that maybe I had been drinking more or had been dehydrated on Tuesday. That doesn't explain it in my eyes...because the numbers have been up and down for weeks now and I'm not really changing my overall hydration status.

I feel....ticked off. I'm really tired of this up and down. I told my husband today that I won't be returning for any more u/sounds etc until it's time to have baby in 2 1/2-3 weeks. WHY? What IF my AFI measures below 5...do they honestly think I'd let them take the baby now before 34 weeks? Of course not...because I realize that the next day (and with a diff. tech) my AFI could be back up again.

What frustrates me the most is that each time something has come up slightly abnormal, I've been made to believe that something is 'really wrong'...hence the steroid injections to mature baby's lungs at 28 weeks, the hospitalization, the numerous u/sounds and opinions, etc etc. The result is that I have actually felt sort of ...tortured emotionally....for really no good reason.

When I went to see the new doc, my blood pressure was 130/80. That, honestly, is not all THAT high for me.....I'm usually 110-120/60-80 depending....so it didn't freak me out at all. However, I ended up having to have a blood draw and do a 24 hour urine test....it was just 130/80 ONE time...and the next day it was 115/65, but I was still doing the 24 hour urine. I knew from the very beginning it would be normal.

Quite frankly, I'm beginning to feel a little put out by this whole thing. I need some peace, calm and normalcy before delivering this baby and starting radiation. I just...do! I don't want to go running to u/sound 2-3 times a week to get 2-3 very different results that at the end of the day have NO meaning or consequence....it is making me insane.

DH, in his paternalistic "I am the doctor" voice told me I'll do exactly what my doctor's tell me to. That, just fyi, is not the way to deal with me. I recognize his frustration and he feels as upset/frustrated as I do. He always calls me post-u/sound "Well, what was it? (the AFI)" I give him the number and if it's low, he says "what does that mean?" My response lately has been "who knows? Probably nothing" which makes him irate. "What do you MEAN you DONT KNOW"..."Don't tell me something without knowing what it MEANS". Ummmm, OK...guess what...I feel the exact same way! Perhaps they touched on AFI when YOU were in medical school, dear...or...maybe you could do some of your OWN research Geesh...don't kill the messenger here!

So....I guess it's just been one of those days here. Hopefully, the sun will come out this afternoon and we'll be able to go out in the backyard and play or go fishing/feed the ducks so I can pull myself out of this funk.

kris

[PrincessFiona]

I was feeling very tired last week after my last treatment and then Saturday when I was shopping with Thomas, I started having burning/tearing pains in my lower abdomen. I decided not to go in to OB because I wasn't contracting and wasn't passing any blood, etc....the next day was Easter and I wanted to be home for the kids. Sunday I felt much better and thought things were fine. I had my ultrasound appointment on Monday and the u/sound tech tried for a very long time to find amniotic fluid...she was able to find ~ 3.5cm. Baby was doing ok, but had not been moving much.

My ob appointment was right after the u/sound. He decided it was "time to pull the plug" after conferring with the perinatologist. I was sent to the hospital to be monitored, and by the time I got there, I was passing brown clots (old coagulated blood) and brown fluild. I was very nervous until they got me back onto the monitor and we were able to see that she was still doing well.

At 3.50pm she came screaming into the world with her tiny little lungs (she sounds like a little puppy! Smile) and an apgar of 8 and later a 9 (better than two of my term babies!). Initially, when I visited her she had a wet lung and she was making horrible seal-like sounds when she breathed. Her little chest heaved up and down and she seemed miserable. I was allowed to hold her that evening when her breathing had stabilized. By morning she was just on regular air by nasal canula...by afternoon, she was breathing freely without any canula.

She is a big baby for 33 weeks...I was told this was likely due to the steroids and my elevated sugars when I was taking them. Despite her good size, she is still working to regulate her body temp and is unable to feed on her own...BUT...she tried to nurse today for the first time (we got the all clear from the oncologist and perinatologist to breastfeed! Very Happy ) and has tolerated feedings through an NG tube well. Within two days we expect her to be feeding from a bottle or the breast (if my darn milk will ever come in Confused )

She is beautiful...and perfect....and I am amazed every time that I hold her or look at her that she is doing so well and that she is mine. I am so...happy...and so relieved. I can't wait to post pictures to show her off to you!

The kids are so happy. Andrew and Amanda came to see her the next day (Alex was home with the flu and cried for an hour after Thomas brought them up). They examined every part of her and Andrew probably hugged me 7 or 8 times because he was so happy. Amanda was beside herself with joy...though she was quick to comment on the baby 'pimples' and double chin she has. Mr. Green Alex was feeling better, so we let him skip school so he could come up with Aidan today. When he saw her, Alex squealed with joy and kept saying "she's so cute, she's so cute, I love her so much!". Aidan had been told he was coming up to see mommy and baby Zoe and that baby Zoe was "here". He ran into my room and when I lifted him up onto the bed, he pulled up my gown to "see" baby Zoe. Laughing The look on his face when he actually got to see her was ... priceless! He was completely in shock...then he immediately begged to be able to hold her. When I explained that he was too little to hold her, he quickly lost interest. We spent the next 2 hours on the pedi floor in the playroom playing!

I wish you all were here and could come in and see her. baby

[PrincessFiona]

It's been awhile since I've updated. So much has happened and there have been so many times that I wanted to pop in here and touch base with everyone! It's been a really up and down 8 days...

Zoe has continued to do well in the NICU. They are continuing to wean her from the isolette and hopefully she'll be taking a bottle soon....I say bottle because...my milk never really came in. This was a very hard thing for me to accept. I nursed Andrew and Amanda for ~1 year, but....I nursed Alex for (*gulp*) 3 years and Aidan up until the day that I took my first chemo (he was 2). It is something that has always been very important to me and when I never experienced 'engorgement', etc I kept hoping that it would come "tomorrow"...but....tomorrow really just brought a little colustrum and eventualy about 10 drops of breastmilk/breast after 20 minutes of pumping. At first, I cried about it a lot (postpartum hormones and all). DH didn't really understand..."She is healthy, we have a POSITIVE outcome...if this is the worst thing to come from your lymphoma, then OH WELL". I told him that I felt like an impotent man ( I know...OH, the melodrama...but in my heart, there is a part of me that grieves and feels like a real failure). I had a morning where I woke up crying...and other mornings where I woke up grabbing my breasts to see if 'finally' there was something there. It all seems very silly...but I'll just shove it off on my heightened emotional post-partum self. My OB listened, comforted me and then basically told me that this was mother nature's way of saying "no more". He refused to prescribe reglan for me, but he didn't rule it out for another day....I have been really impressed by him! I'm...glad...that things worked out the way that they did.

Recently, he asked me to come back and see him for a 2 week follow-up and then suggested that I could return to the other OB for my 6 week and continuing care. I told him that I was so happy with the care that he had given me and for being such a calming force that I wanted to continue on with him now as my ob/gyn....he said he'd be "honored". So...now...I officially have a male ob...it's really funny that I have spent the last 18 years of my life avoiding male ob docs and now I feel so comfortable with him....I wonder why I ever made such a big deal about it all now.

Thomas has delt with all of the stress of my being in the hospital and then driving back and forth between home and the hospital in a rather...pitiful manner....he is angry, exhausted and in short...totally in the dog house...and yet, I understand that he is just at the end of his rope. My mom is here helping, but she has limitations due to her own health issues and has been struggling to help with the kids as much as he would like. At the same time though, he is rude to her, arrogant, makes unfriendly comments and has basically put her on the defensive even though she just wants to connect with him and help. I should be mad at him because he's been such a jerk, but I just can't be....he's just totally overwhelmed and I know that he is struggling to cope...

The kids are equally stressed out. Yesterday, Andrew nearly cried when he had to go to boyscouts. "I never see you..please don't make me go". His ride was literally at the door. I told him I'd have dinner (I'd just gotten home from bathing Zoe) and then meet him at the meeting. Then, I came home to pick up Thomas (who spazzed out over the fact that I worte a $75 check to boyscouts and ended up screaming at me...I left him at home) and then drive back to the hospital for the 9pm feeding. Amanda has become even more moody and anxious. We had to take her to the pedi two weeks ago because she was having .... anxiety attacks ... now she seems to be worse. She made herself a waffle yesterday and put Nutella on it...then she thought a bug got into it and spent nearly 2 HOURS coughing and gagging. She scared my mother to death..... Alex seems to actually be hanging in there the best...but Aidan demands that I feed him Milk Bobies (bottle) everytime I'm home...and...I have to hold him as if he were a baby.

They have told me 1-2 more weekss of NICU...and I'm just...I'm exhausted. Then I have a "friend" (term used loosely) who has constantly called me for help with her website for school. She actually managed to talk the administration at the Uni into paying her to develop a website for a program she helps with....for 3 paid credit hours as a full professor...then she promptly called me for *help* because she has no idea of how to build a website. She came during my chemo sessions asking for *help*, called me during chemo for *help* (I actually spent an hour during one chemo talking her though something)...when she found out that there was no internet access in my chemo room she asked me to meet her the day before chemo to *help* and I spent ~4 hours *helping* aka. doing.

So...she never finished her website because she expects ME to do the work. Here I am a week post-partum, and I was sitting in the NICU with Zoe and the nurse's phone rang....it was HER calling me.

"Kris, it's kind of eery that I can track you down anywhere, isn't it?". Ummm, yes, it's actually getting to be fatal attraction eery now!!!! She told me she'd talked to my mom who said I was up at the NICU and that I am sick with a fever and..."I have a huge favor to ask of you". Fortuitously, at that time my cell phone rang. I was waiting for a call back from my OB because I have developed a fever that I've held on to for two days (another long story)....so...I had to hang up....

I'm just shocked at the nerve of people....I know that she was still moaning and carrying on weeks after she had surgery a year ago...and...I'm a TAD busy right now...I'm really sorry that she can't finish her website ...NOT!

The end of this rambling blog entry finds me back in the hospital...with endometritis. I had some problems after delivery with having no flow at all....After 2 days I had to submit to a fairly aggressive uterine massage to get things working...My OB has stopped by the NICU several times and has been telling me to take it easy and check for fever...he was concerned by the two pelvic ultrasounds that I had. We thought I'd turned the corner on it all and then Last night I developed a temp of 100.4...not too high, but I was supposed to call for anything above 100. This morning it was 100.6 and when I checked in it was 101.

I got to see my dh's partner first ( Yeah, now his partner knows how fat I am because he's had the thrill of examining me. ) His partner basically told me that I didn't look sick and that he thought I'd be discharged in the morning.....he wasn't concerned.

Then my OB came in and did a pelvic exam, expressed quite a bit of concern.

My blood results came back and apparently, my CRP (something reactive protein...I'm waaaay too lazy now to look it up) was 15.8 and normal is something like .8 .... which means...I do indeed have a problem.

Now I'm on an every 6 hour antibiotic pump and...if it's not better in 2 days then I'll need a D&C....not the end of the world...

I missed Alex's first choir concert tonight...and...the kids came to vist and pretty much tore up the room here after it was all over. :!

They took a chest x-ray and there is still an abnormality and Thomas is just absolutely freaking out.

I soooo want this to be over. I just want to wake up and have this all have just been a bad dream!!!!

Kris

[PrincessFiona]

So...I'm being discharged today after expressing my grumpiness. :> I have to see my OB in the clinic every day and come back to the hospital's outpatient services for IV antibiotics...but...after I receive my 3rd dose of antibiotics this afternoon, I'm going HOME to my kiddos! yippee.

And..speaking of kiddos, can I just introduce our little Zoe:


Introducing Zoe

Zoe with Andrew and Amanda

Zoe with Grammy

She's so cute...I love her, I lover her...

"bad baby Zoe..."

Proud Big Brother

Proud Big Sister "I'm going to teach her all about boys and cars and makeup and....."

so cute

even cuter


adorable, I know...

Baby and Papa

Enough with the pictures, mom!

[PrincessFiona]

Home, home, home I came...to fighting kids, grumpy spouse and overwhelmed mom. Why did I want to come home? No..I'm so glad I'm here, but...

I have spent all afternoon disciplining my daughter (NOT how I wanted to spend the day with her, but she has become so mean-spirited and rude that I can't stand it anymore.) Today when I got home, she came downstairs and said hi and grabbed some toilet paper (a long stream of it) to wipe her nose and then intentionally tossed it on the floor. My mom said "Amanda, pick that up" and she thought I couldn't hear...so...Amanda turned to my mom and said "I didn't do that (boldfaced lie)...don't you go blaming people for things that they didn't do" in the rudest most ridiculous tone of voice ever. This is how it has been with her and it is...awful.

I feel for my daughter. Her 10th bday is coming up and she planned this big party and then when it came down to inviting someone...she couldn't think of a friend to invite She said she has no friends and really....she's miserable and very lonely. The girls at school are being so mean to her...they're such...snobs. Our nextdoor neighbor invited her to spend the night a week ago. They had a great time and Amanda was sooo happy and full of smiles. Then, the girl completely ignored her and even *dissed* her at school...and she just came unraveled. It's not right that girls are such little bitches at such an early age. I want to go over and just rip every hair out of her little head.

I understand that Amanda's under stress, but her behavior has gone way too far....at dinner, she refused to eat because I wouldn't let her eat Ramen soup (again). She has been living on ramen soup and waffles. She's a vegetarian but won't eat anything healthy. We had prepared potatoes, veggies and applesauce for her and when she didn't get her way, she stomped up to my room. After dinner I came up and she was laying on my bed watching a movie. I told her her behavior was completely unacceptable, that despite the fact that I understand that she is stressed out that I won't tolerate it anymore. I made her go to her room for the rest of the night and left her plate out to be reheated if she got hungry. 2 hours later, I went up and told her that if she wanted to come down (yes, I was feeling wimpy) that she had to apologize to my mother for her rudeness. She flipped her head around, ignored me and just kept reading a book. So...I left it at that.

Then, of course, Thomas intervened a half an hour later. She found out that he was going to the grocery store and begged for him to come upstairs. Suddenly, she was downstairs spelling S*O*R*R*Y out to my mom. Thomas insited that she SAY it and as soon as she did (and NOT with much genuine meaning), he let her 1. come with him and 2. informed me that she could eat something else. Can I kill him now? As usual, I am the bad guy. They are home from the store and she's cheerfully talking with him/hanging out with him. It makes me feel badly about myself and my mothering.

In the meantime, I had talked to Andrew who was near tears all afternoon saying that Thomas is too hard on him (true) and that no one has been nice to him for awhile. To top it off, with all of the stress going on here, we got him to school late a few days and he got 3 days of detention during lunch that they wouldn't let him out of...there are NO excuses here for 3 tardees...Then, after I listened to him and we talked for a half an hour and I got him to play with our other boys and eventake a bath with them, he marched into Amanda's room and told her "You're ugly and you have no friends" to retaliate for how awful she has been to him. Apparently, as soon as he was feeling good and laughing/feeling connected with his other siblings again, he felt free to take his frustration out on Amanda...so...I made him apologize for that.

~sigh

I've lost control of my family.....How could things have deteriorated this much over the last few months and how on EARTH will I get things back under control with everything going on?

Thomas is grouchy, my mom is exhausted and needs some time for herself because quite frankly, Thomas has been a real butthead to her. He doesn't let her do things and then complains that she doesn't do anything. He complains because she doesn't get up and help him get the kids out the door in the morning but doesn't give her credit for watching them all day long. Yes, my mom isn't perfect, but...good LORD.

Anytime they have a conversation, it ends with him being rude to her...I'm sure Amanda sees this and thinks it is permission to be rude to her too! Example of rudeness: My mom is a nurse practitioner and currently does geriatrics out of a passion for working with the elderly. She cared for my grandmother as she died from Alzheimer's disease and she just ... cares about the elderly. My husband knows this and yet he says to her "geriatrics should be completely eliminated.....these people just need to be allowed to die ...who would want to do geriatrics" etc etc. Every day that I've been in the hospital I've had to listen to some little juicy tidbit from my mom after everyone went upstairs....

MUST everything that dh thinks come through his mouth? Does he NOT have a filter?

I understand that HE is under stress....but...come ON! Does her really think I will EVER host his mother now? EVER? He has also been frightfully rude to me in front of my mother because he's "stressed". Please....cry me a river.

He is also really, really pushing the "my mom is coming" thing. I have pretty much laughed in his face and told him "let me know when hell freezes over...then you can book her ticket". I told him it may be years before I'd be willing to host her and then he went on about how SHE wants to see the baby. Quite frankly, I don't care if she ever sees me or my children again and I don't give a rip about some kind of grandmother rights or letting my kids build a relationship with her or whatever...
Basically, I told him if his mom comes in the summer, I'll pack up the kids and head to TX and....I will. Won't he be surprised.

Maybe I will find forgiveness for her as I continue on this journey, but something that I've been realizing is that it is actually ok to...decide to say "NO".

Friends of ours (also colleagues of Thomas) disappeared from our lives after my diagnosis. I wanted to forgive them for a long time....if they would just...call or contact me somehow.....after awhile though, I was just so hurt and angry and I decided it was OK to walk away from those people and choose not to let them back into my life when it was convenient/"safe" for them. When I decided that, I actually let go of my anger.

Funny thing....I caught one of these people coming in to see Zoe on 2 different occasions. She's a pediatrician, so she was able to come and go in the NICU. I put her name on the "can't visit" list because it really ticked me off that she would ignore me and then come in and see the baby. When she was told that she couldn't visit anymore, she came to me and told me how sorry she was about not contacting me before. We had this sort of...hell-come-to jesus moment in the middle of the NICU where I basically said "how could you have abandoned me at that time in my life" and she apologized and explained.....

So...I forgive her...

Hmmm....please don't tell me there is hope for my mil....I really don't want to have her around anymore.

What's good?

A lot.

Zoe graduated today from the isolette to a "big girl bed". You GO GIRL!
Alex had a great day at school, Aidan is thrilled to see me, I get to sleep in my own bed without someone waking me up every couple of hours for temp/blood pressure monitoring, etc and

this may seem silly...

but I'm actually eating for 1...for the first time in years. I'm eating like a normal person and I feel really good about it. I made a choice about my health and feeling better about myself and I've stuck to it since Zoe was born...that's....9 days...

I'm really happy about that.

The sun will come out tomorrow...I know it...if it doesn't, I'll have to light a bonfire in my backyard or something to trick myself!

[PrincessFiona]

Quick Update...I'm at the hospital with Zoe and am taking a lunch break...I'm just waiting for Thomas to finish up with his patients so we can eat together.

Yesterday I was terribly busy with dr's appts. and didn't get home until ~4...just in time to drive Amanda to dance class and watch her goof off and pretend she was a rock star instead of practicing with the other girls for the dance recital. Then I headed over to the hospital to see Zoe (I didn't really get to see her all day because I had to go in for bloodwork then see the OB then go in for the IV antibiotics, etc etc...) Thomas and I dropped by a fast food place for dinner and then got home at 8.30pm.

All of the kids met me at the door with various complaints and then Amanda ended up bursting into tears when I went up to her room with her. She sobbed and sobbed telling me that sure things are ok today, but tomorrow she'll probably come home and I'll be back in the hospital, and that she's sure that the cancer will come back and I will die...and that the kids in school are calling her "cow butt", "ugly" and are telling her "you're a loser and you have no friends".

I held her and sobbed with her....

Andrew hid outside of the door and was throwing in his 2 cents "You're beautiful", and he even said "That's bullshit" about some of the things the little girls had been saying to her...and I just let him get away with it. I'm so glad to see them getting along a little bit better....He asked her to sleep in his room last night and they laid in bed and talked to each other until quite late.

Once I got them settled (10.30pm) I drove back to the hospital to say goodnight to little Zoe...and came home about midnight. I hated to leave because the nurse assigned to her side of the room didn't comfort crying babies and seemed so rough with the baby she was caring for when I was there.....I just wanted to hide Zoe in her diaper bag and bring her home.

This is harder than I thought it would be....at this point, I thought things would be winding down....in all reality, now that things are more "safe" it seems like everyone around me is kind of losing it....
I'm going to head home after my outpatient antibiotics so that I can be there when the kids get home from school.

Healthwise, I feel sooo much better. Today I notice a dramatic difference in my level of abdominal pain. I don't think I even realized how much discomfort I had until day when it is gone....Thank goodness for the positive!!!!

Off to meet Thomas for lunch....

Kris

[PrincessFiona]

Life on the rollercoaster continues.

I talked to Amanda's teacher and she is meeting with all of the 4th grade girls in her class and the teacher's class that she team teaches with over lunch today with the school social worker. They are planning an end of the year "we've noticed some bad behavior" problem solving talk that won't single out any one person. That's good. I hope it helps.

That being said, she went on a sleepover Friday night with a friend from our old neighborhood. The mom paid for them to stay at Holiday Inn and swim, etc. I was at the hospital with Zoe the next day when the mom showed up at our door, screamed at my mom, threw Amanda's things in the doorway and left. Apparently, another girl from the neighborhood had showed up and had invited both my daughter and the girl she was spending the night with to the movies....Amanda wanted to go, and the other girl didn't. Amanda called my husband and asked for permission...and...my daughter left her sleepover to go to the movies with someone else.

I tried to use this as a real learning exercise, but truthfully, I just wanted to ring Amanda's little neck. She honestly didn't seem to care much....sigh....

Sunday when I was at the hospital, my mom was watching the kids (Thomas worked all weekend) and Alex (age 7) and our 5 year old neighbor got onto Thomas' computer and were looking up Legend of Zelda videos....They came across....well, what else...PORN videos with Link from the Legend of Zelda. Apparently, while my mom innocently sat in the living room Alex educated the neighbor boy on the "f" word (in the video) as well as providing sex ed.

So...the boy went home to his mom (crazy neighbor) and told her everything....Their dad decided that his children were no longer allowed to have contact with MY children....but the mom decided to call and talk to me instead. At least she got THAT part of parenting right since she doesn't seem to be able to manage anything else including keeping her 5 and 4 year olds at THEIR house.....

I was, of course, mortified and I talked to Alex....who swore it was innocent and that they were looking for "Link movies" and had come across this one. I believe him since he is so limited in his experience with the computer and was using Thomas' computer for the first time. It isn't protected by Net Nanny....I still took away his game cube and made him go up to bed...and he was devastated.

Then, as I was talking to crazy neighbor again on the phone she was asking her 5 year old about all of this...the child was confessing to doing many of these things on THEIR computer at home and dad was in the background telling him to be quiet and telling him it wasn't true.... whatever. In any case, the computer, gamecube and basically any form of entertainment in this house is just simply off limits now.

But...for the love of all that is good and HOLY...is it POSSIBLE for things to NOT fall apart in my absence?

Zoe is still a "feeder and a grower" but she doesn't actually want to do the feeding part. We sometimes manage to get her to take a bottle, but she sleeps through the experience while we massage her chin and cheeks....which seems strangely, strangely bizarre to me. Why force it if she isn't ready? At the same time, I'm willing to force it because I just want her to get the hell out of there!

Of course, things could be much worse! Friday night I was there when a 37 weeker came in...they closed my curtains and I could hear what sounded like crying non-stop from this baby...I was beside myself that they didn't comfort him...and then they opened my curtains....The nurse was standing next to him rubbing/patting him in a comforting way...the maoning/crying was actually his attempts at breathing. After an hour of listening to him struggle, I went home...it was so sad.

The next morning when I came in, they had a transport team there. The baby basically was dying and they were trying to stabilize him for transport to the cities. The whole family was gathered at the bedside and they closed all of our curtains to give the family privacy. The mom began sobbing...and she sobbed "no, please...no" off and on for the good part of 2 hours. I didn't feel like I could leave because the transport isolette and family was blocking the whole exit...so I just sat there, held Zoe and cried because I felt like I was experiencing this babie's death with his mother. I think all of the parents stuck in the NICU were feeling quite...devastated...with this family. It took them several hours to stabilize baby enough to move into the trasnport isolette.

Later, I pieced together what had happened...baby had developed sepsis from strep....and was in shock. Mom had tested negative for strep before delivery, but.....apparently...she wasn't....Baby was transported, I assume, because they don't do dialysis here on neonates.

I heard he is doing better.....I need to count my blessings that Zoe's stay has been relatively uneventful...this is a good reminder.

kris

[PrincessFiona]

It seems like when I have a contemplative moment and have a lot to say that I'm unable to sit down and write. Today I have the time because I have 3 sick children at home and...a sick mom. I've run to the NICU, now I'm home...I'll go back to the NICU for Zoe's lunch...then back home....I can sit and write...but I feel distracted!

The last 2 weeks have just blown by and I wish now that I had been able to take a few minutes each day to "blog" for myself so that I would remember the ups and downs of this time!

Two days ago, the very first nurse that treated Zoe came to me and was asking how I was feeling...then she reminded me that she had been there for my "episode". Episode? I hadn't the foggiest idea of what she was talking about! I asked her if she meant the birth..."No..your..you know...episode". I kind of freaked out silently trying to figure out what on earth had happened...finally she just came out with it...She did my original intake to the NICU and in the middle of it I had handed her the baby and thrown up all over the floor, myself, etc. It is just strange to me that I would have forgotten that! It made me wonder what else I have sort of tucked away in the recesses of my mind! Though...perhaps if they are memories like that they're better left in the dark corners

Sadly, I remember little about Zoe's birth except feeling so anxious and agitated by the peridural anesthesia. Something about spinal's makes me panic. To avoid any emberassing crying or hysteria, I asked for a good dose of benadryl before they administered it. That made things more bearable, but I still felt agitated and I was trying really hard to keep myself calm. The anesthesiologist gave me a bit of versed to take the edge off and all I remember is telling myself it would all be over soon, begging myself inwardly to just take deep breaths...I remember the feel of the table, the anxiety and the sensation of baby being 'delivered'...but...I don't remember them holding her up or any other part of her being born. I wish that I did. I have a picture of it...but not the real memory.

My predominant feeling the last two weeks has pretty much been...contemplative...I find that I'm often thinking about the meaning of life, about my own mortality and my concerns about my health...and the reality of how I've lifed my life and been as a mother, wife, etc. At one point I remember thinking "where is my aha experience"...I thought that after the diagnosis I would make these sudden big changes in my life. Instead, it seemed like things were the same. Now, as I look back, I realize how much my innner-landscape has shifted. I feel more connected to myself and more quiet.

I realize that I'm doing a lot of grieving right now. It's funny how these things come late. Yesterday I was in the NICU for rounds, and the nurse practitioner was fillin the doctor and other 2 nurses in on my history. "35 eyar old mother, lymphoma diagnosed during 15th week of pregnancy...CHOP-Rituxan chemotherapy x 6 during pregnancy, history of oligohydramnios ...blah, blah, blah. I could hear them through the curtain and it was shocking to me....a wave of sadness swept over me that I hadn't felt before. I have spent this pregnancy putting a smile on my face, being positive, telling the u/sound staff and anyone else who gave me one of those sad little smiles how "everything would be fine" and how "the baby is developing normally and all studies show that being exposed to chemotherapy during the 2nd trimester doesn't put baby at a greater risk of developmental problems etc"...and people would just kind of give me that consoling "poor thing" look. I have been very peppy and upbeat in real life...laughing and joking for everyone around me....because it feels good to be positive and...because we all needed it.

Yesterday, I left the NICU and the waves just came crashing in. I cried in the car all the way home...how could something like this happen....how could we be so lucky that the baby actually IS ok? No one has to scratch to deep below the surface lately to get me to turn into a blubbering heap. ..so I find myself avoiding friends or conversations about anything remotely related to the cancer, baby etc with family. I'll talk at length about anything else.

I saw my counselor yesterday for the first time in a month...my health constantly got in the way of me being able to go in. She is a breast cancer survivor and does group therapy with people with ovarian cancer. She assured me that this is 'normal'....that now that the baby is here that I can look back and start dealing with little pieces of this at a time.

For some reading my blogs here, I know that my tone sounds depressed or gloomy and though there is a part of me that is tempted to back off and not write while I'm struggling, I decided to keep writing. This is reality...it's what it's like to look in the mirror and wonder if you will be here to see your newborn off to kindergarten. It's what a family goes through when faced with serious illness...we have our dramatic moments...Thomas and I have a lot of sadness and fear.

Tomorrow is the dreaded PET scan....we will know then if there is a full remission to celebrate of if....there isn't....For days I have been withdrawn and worried...Thomas has been aggressive then loving...then angry and withdrawn. I'm terrified of finding out that the treatment hasn't completely killed the tumor and that we may simply be facing part II. Thomas tries to pump me up "who else will be here to kick me in the butt? Kris, we need you....you are not going to die...you have to be here to raise our children...things like that just don't happen".

But ... things like that do happen...every day...horrible, awful things happen to people and families...I really might not be here to raise my children...they may grow up without their mother, and that makes me so sad that I can hardly stand it. Even if the PET is clear tomorrow, I will spend years worrying at the first sign of any new symptom, ache or pain..."is this it?". Life is fragile...we spend way too much time focusing on things that simply aren't important at all...

I wish that I could go back and do so many things in my life differently, but I realize that all I can do now is focus on today and how I can be a better mom, better wife...better daughter...better friend. I wasted a lot of time feeling negative and unhappy and missed out on a lot of the older kid's childhoods simply because I allowed that unhappiness to distract me. There are a lot of things about my current life that I am working very hard to change so that I can be happy about who I am and where I'm at today.

[PrincessFiona]

So the bottom line is that there is not a remission...I don't really know what else to say about it. Thomas called in and got the radiology report and there is tumor cell uptake of glucose. I don't know how much...I don't know what it means in terms of treatment...but I do know that this is NOT what we expected and it isn't good news. I thought tonight we would be celebrating the "R" word...instead, dh is pacing through the house and I'm pretty much just panicked. I am supposed to be starting radiation tomorrow...but I'll need to contact my oncologist I guess.

Kris

[PrincessFiona]

The oncologist called Thomas and told him not to panic..."this is why we do radiation" ... the uptake measured is isolated....no bone marrow transplant right now....he told us to relax...that he doesn't anticipate this will affect my survival...it is either active tumor or necrotic tumor tissue doing...something...I can't STAND this...I just can't emotionally tolerate it...I just don't feel like I can do this today. I want to go to the NICU and hold my little girl....but I won't even get any privacy...and I have to take Amanda up there after I pick her up from the Montessori tutoring.....