Life In The Real World

[PrincessFiona]

May 04, 2006

Radiation round 1...done. Not too bad...more of a psychological thriller than anything else.

First, there were renewed rounds of x-rays....the machine seemed very close to me and I started feeling anxious: "What if the machine breaks and falls on me" kind of thinking. Rolling Eyes It occurred to me while I was laying there with these things rotating around me that after the MRI's, PET scan and radiation I don't ever want to be buried in a coffin. (morbid thought, I know) I started to feel like the walls were closing in on me...wondered if the ceiling might fall down around me Rolling Eyes I just kept reminding myself that it was anxiety and ... it passed before I knew it. When I got up and got dressed though I was flushed all the way up my chest and face from nervousness.

I have tons of black marks all over my chest and sides...they will be tattooing little black dots on me next week. I asked them for a fairy princess tattoo, but...they don't take requests. Mr. Green

On the humiliating side of my day...The rad onc took me in his office and explained he could only do 17 rounds of radiation instead of 20. Why? If you are on the heavy side, sit with me and have a good sob...if not...well....I hate you temporarily. I asked why the 17 rounds instead of the 20 and he said "I don't know how to say this to you...well...um....thinner people have a larger lung volume and..." I interrupted him..."that's ok, I get the picture" and cracked a few jokes to change the subject. He laughed with me and then just explained that I had a smaller lung volume due to my weight. Great. He also mentioned my PET scan...to me, it sounded like he thought it was still active tumor cells....but he also said that they respond very well to radiation.

Then I went over to the onc side to show some pics of the baby to the nurse who had administered my chemo nearly every time. She also had a primary mediastinal lymphoma 19 years ago and survived and went on to have 4 girls....today was her day off, but one of the other nurses came out "Oh, KRIS.....Brenda will be so upset that she missed you! I have to call her immediately and tell her. She told me yesterday that she saw you two days ago at Coborn's and you looked like you were "really close"...she said after seeing you that it must be any day now".

"Ummm....I had the baby 2 weeks ago...but...I'll file that away in the recesses of my mind" I joked. The nurse turned red. "I'm soooo sorry".
"It's alright...no problem."

Sad

chocolate chip cookies anyone? Confused

Here I am doing sooo well with my eating...I can't believe how disciplined I am and how well I'm doing with single portion sizes and no snacking...and in two weeks I've lost and gained 1/2 pound over and over again.

What is UP with that? There is part of me that feels like just giving up....I'm eating literally 1/3 of what I used to eat and I'm NOT losing weight.

There truly is no justice.

[PrincessFiona]

May 9, 2006

Warning: Long, rambling post ahead...at least that's what I anticipate....I apologize in advance...I just want to be sure and record this for myself....and those of you still reading will have to muddle through, I guess.

I keep thinking that I'm doing really well...and in many ways, I am...I find that I am laughing a lot and am generally feeling optimistic much of the day...then on the drive home at night I sometimes just burst into uncontrollable sobs without really understanding what the real trigger is...most of the time it is my attempts to feed the baby though that set me off. I feel so incompetent and it is so hard for me to leave her with other people to tuck her in and meet her needs...especially when they don't do things the way that I would. I find myself getting much grouchier about her care and often I have to say nothing to prevent myself from saying somethign that I will regret. Example? One of the nurses replaced her NG tube with tubing that was so long that it was a good 2-3 times the length of her body. She didn't tie it up or clip it away or anything. I came in and it was wrapped all around Zoe's face. I nearly had a fit....It took every ounce of self-controlt hat I had not to burst into tears and...yell. I rolled it up like a hose and then taped it. The nurse's watched me, but said nothing. Later, I was able to comment that I would like it kept away from her so that she doesn't strangle...and I still don't know that I was super polite. I want her home...I want to snuggle her in my bed, put her in her bassinet, carry her around my house....not be tied to a NICU chair. I just want her HOME. Can I just say though that the NICU nurses really are fabulous, wonderful people and I don't have 'real' complaints...the problems I'm having now are really a result of me just fealing worn out. These nurses really make me want to become a nurse....

Thomas and I have been alternating between fighting and being civil and Friday night, I just lost it...I got so angry that I kept calling his cell phone and ....*gulp* hanging up. Rolling Eyes Yes...maturity is on my side these days. Rolling Eyes It all started with Amanda's Birthday. She decided that for her present, she wanted a new bike. We were supposed to go together (she, Thomas and I) on the weekend to get it, but she talked him into going on Friday without me....after dh complained about my messy car (it...is actually quite messy, but he didn't have to be rude about it) they finally talked me into letting them go alone.

She came back with a BLACK and BROWN boy's bike (Complete with boy bar) and a black helmet...I totally FREAKED out about it....as silly as it sounds. I just couldn't get over the fact that he bought her a boy's bike and that it was black....actually, I'm still not quite over it if I'm honest. I feel annoyed that my daughter now rejects anything femine...and also insists on wearing a single pair of pants to school right now that is so full of holes that it is simply embarassing. I was so angry with Thomas that I couldn't see straight and so disappointed in my daughter's choice that I struggled to make eye contact with her at all. I don't know why I let it get to me so much. I want to be able to embrace her where she is at in her life right now, but I just...I can't. She makes it so hard with her sass and obvious rejection and then embrace of me. Part of me also wonders how Thomas could manage without me here...Every time he makes choices that I wouldn't I get more upset than usual...because I imagine that if I were to not survive this...that...he will sometimes make choices that I wouldn't and I won't be here....

He went out on a boy's night out Friday night and I felt so resentful...and yet here I am always gone at the hospital etc and he's usually the one who has to take care of the kids...I should have been more understanding. I WANTED him to go and have a good time but then when he did, I couldn't let it rest.....I can't believe that I reacted the way that I did.

I was near tears anytime I was in the NICU this weekend because I feel like if Zoe stays much longer that quite honestly there won't be much of a 'home" to come back to. The tension is so thick that you can cut it with a knife and I don't know how much more stress we can tolerate. She's been in the NICU for 3 weeks today....and she's still not taking the majority of her feeds by mouth. She is also very, very sleepy....something I was told may need to be investigated if it doesn't improve. Embarassed

The lactation consultant came in to see me on Saturday. She wanted me to try the supplemental nursing system. For those of you who don't know what I'm talking about, you can learn all about it here:
http://www.medela.com/NewFiles/pdfs/SNS ... angIns.pdf
It will likely be more information than you want to know. Laughing Anyway...she came in and basically asked me to....disrobe in front of her. She is, of course, in perfect physical condition and there I am fat, with black lines drawn all over my sides and chest for the radiation and with boobs that pretty much hang down to my knees (sorry guys!). She got me a gown when it became apparent that I was embarassed (I've restarted an annoying habit of getting flushed everytime I get upset)....and then she noticed my bra:

"Oh...MY...."

I realized this is my most comfy bra...that I've had for about 5 years...but it also is ... sigh... no longer white...more like...gray. Rolling Eyes Yes, the dawkter's wife wearing old, gray, wal-mart bras!

"Kris, it isn't even....padded"

double sigh....I nearly started crying. I promised to go shopping for new bras (and yes, I dropped $50 on just TWO bras the next day...and man...does it make a HUGE difference. Who KNEW I could get those little girls to stand back up again!!! Mr. Green )

Then, she proceeded to "help" me get Zoe latched on, etc for an hour.... I think I just finally zoned out and decided it wasn't really happening. Then...she came back on Sunday too....and by that time, I was just...resigned. She is a neat lady and she wants to help....she can't help it that I'm embarassed by my body and my breasts. She did mention that my breasts are "heavy". I'm definitely getting the girls lifted someday...really.

OH...I threw away my dingy bras....all of them. ewwwww!

The supplemental nursing system has some bugs and I just can't get it to work right...so this weekend, I was fumbling around with the poor lactation consultant watching and helping...then later on my own with the nurses behind me at their desks even though I was hidden behind a curtain. The whole time I tried to "nurse" Zoe, I imagined that they were asking themselves why I didn't just "give it up" and I'm sure that they think I'm harming her or preventing her from going home now in some way.

Several times now, they have reported being able to feed her most or all of her feed by bottle...and when I come....she rarely takes 1/2. I feel like they think that I'm not a good mother to her, that I'm holding her back by not feeding her well...then I ask myself if I AM reluctant since I so desperately wanted to be able to breastfeed...then the crying starts all over again. Sad


Also, while I was in the middle of trying to use the supplemental nursing system on Sunday, my OB stopped by to see how I was doing. He came in behind the curtains and I tried to cover up a little bit...but I think he pretty much got an eye full. Embarassed All I can say though is thank God for him...he is a wonderful, caring doctor. He took time to come and see me on a Sunday while he had call and asked about my emotional state. I joked around and told him that I was hoping to become a professional alcholic when this is all over Mr. Green at first, but then was able to tell him how hard things are right now...and he listened and he understood. I am so glad that he came into my life....he has been a huge help to me. I wonder if his wife was sitting at home on Sunday grumbling about the wasted weekend because he was on call????

Funny thing...I have a RX for Reglan that I got from the oncologist. In a couple of moments of weakness I did end up taking two of the tablets to boost milk production...but when he said a clear and resounding "NO" I stopped...I value the dr/pt. relationship and don't want to lie to my doctor. His nurse, upon hearing this from me last week when we were discussing the whole nursing trauma said "Oh, KRIS...Grow UP...if you have the Reglan, by all means take it for a week and see what it does!" Shocked Apparently though, she shared this conversation with him and when he saw me on Sunday he said "Oh, btw...I think the Reglan would be ok at the anti-emetic doses". Very Happy


Back to the breasts....aren't you glad you're reading? Since I'm having radiation to the chest, this has meant all kinds of flashing for the public....well...for the radiation techs and rad onc anyway....This is probably more embarassing to me than letting them see my chubby midsection. I have drawings with black ink on my sides and...they gave me a little dot of a tattoo on my right...breast. Rolling Eyes I suppose this is my...souvenier? ugh! Every day I have to strip from the waste up and lay on the table semi-exposed. The worst part is that...they took PICTURES of my....breasts....

I had forgotten about it until I got in and saw the rad onc. He was looking at my chart. The front has an obnoxious picture of my face...and the back...the part that was staring right at me? My nipples. Rolling Eyes After 5 children and weight gain and loss....let's just say that they aren't really playboy material anymore. Embarassed It's just so humiliating!!!

Today, the rad onc called me "not a complete responder" and I it just upset me so much....I can't hear anything negative. This was a new guy and he basically said "we got the baby out alive, now we need to get you out alive"...and raised an eyebrow at my info....I felt like throwing myself in front of a train when I left his office....

I just have times where I can't help but to think that this all shouldn't be happening...to anyone...I feel this startling shock and sadness. I wonder how people face death and uncertainty with courage? I can't do it. I am terrified of dying, and I barely am able to manage the uncertainty of a disease where I know that the statistics are on my side. How can people cope with diagnoses of almost certain death? I am in awe of the strength that many people possess.

I sometimes feel that I've lost hope...at those times, a song that I hear on the radio can take me back to times in my childhood and the memories and images are so vivid in my mind that I wonder if my life isn't "flashing before my eyes. The days immediately following the PET scan were terrible for me...I simply don't want to do this anymore.. I want to be spending time with my children and my husband enjoying life like we did before. Right now, even when I am here...I'm not here. I am impatient and tired...and I know that this is hurting them. I keep begging myself to stop focusing so much on my own fears and I try and redirect my attention to them...but it is just so hard. I imagined that after the PET scan I'd be feeling better about all of this, but now I feel worse...even though I've been assured that the radiation "will take care of it". I am continuing to adjust to all of these changes and uncertainty.
_________________

[PrincessFiona]

May 11, 2006

The last two days I've felt much better.

First, Zoe started taking a little at each feeding (and sometimes an entire bottle) and second...I've gotten a little more sleep. I asked my mom to do the 6pm and 9pm feedings and haven't gone in for the midnight feeding. I hate doing it, but I have to get some more rest...and I have to spend time with my other children.

Last night, we all laid in bed and watched old episodes of "Full House" and I realized it's the first time I've done something like this with them in a good 2 months.

The bedtime thing though will have to change once summer starts, I think. Thomas let all of the kids sleep in our room (in our BED) when I was in the hospital......oonce I got home, they 'graduated' to sleeping in sleeping bags on the floor...and now we actually have air mattresses blown up and all over our floor for them to sleep on. Shocked I recognize that this is a comfort thing for them, BUT....I think I will be drawing the line once Zoe is home and school is out....

Must...get....kids...into....own...beds! Laughing

I planted my rasberry and blueberry bushes last weekend along with two...grape vines (which may or may not make it) and bought a bunch of strawberry plants. This week I grabbed a few more rasberrry bushes and more strawberry plants and hopefully I'll start work on my veggie garden this weekend!!!!! I can't wait to clear everything out, add the retaining wall and dirt and....get things planted! I also have a huge perennial garden in the front yard that needs to be started....I need black dirt brought in and then I am going to pick out the flowers....I'll post a 'before' picture when I get a chance...

kris

PS...Did I mention that I'm considering nursing school? I have been so moved by the OB and NICU nurses....and think it would be such a wonderful profession....Thomas thinks it might be just a "phase" and maybe he's right....but...I think being a nurse would be very rewarding!

[PrincessFiona]

May 15, 2006

I was going to wait to update my blog until I brought little Miss Zoe home...I thought a 'homecoming' post would be the next one...but...apparently, it isn't. Confused

Last week, I kind of had a mini-meltdown after my NICU visit. The whole "feeding and growing" b.s. has definitley just gotten me down...First, they started her on the full bottles way too soon and there was a nurse there that would say "I got her to take the entire feed and she was still hungry" about 2 weeks ago...Honestly, at first I just thought that she was lying...then, as she indeed started taking more, I started thinking that they must think that I was lying about her not taking her feeds for me and having to be gavage fed...because the nurses were having more luck than I was....I began feeling hypersensitive (who ME? Rolling Eyes ) but I just kept plucking away at it. I asked the successful nurses for their tips...and it was pretty much...hold her completely away from your body so she doesn't get comfortable and fall asleep, massage her cheeks/chin and when all else fails, squeeze the nipple to squirt the milk into her mouth. Rolling Eyes

Every time Zoe seemed to be 'getting there' with her bottle feeding though, they were increasing her feed amount. So...for example, she would take 32ml of her 38ml feeding and would only have to be 'gavage' fed 6ml...and just as we were celebrating her getting closer, they'd up her feed amount.

Last week on Thursday was my breaking point. She was finally taking about 45 ml (which seems to be her personal best...though she now occasionally bottles 49 or 50...sucking and spitting most of it up though)....They increased her feeding amount from 50 ml to 56ml and I just lost it. It was too MUCH for her and they were forcing it into her tummy. One day I sat there while they gavage fed her the last 10ml of her feeding. The amount in the syringe decreased to 5ml then went up to 12ml...Zoe kept squeezing her tummy and forcing the milk back up into the syringe and after 40 minutes of this (YES, 40 MINUTES) of trying to force her to take the last 5ml, they just pushed it into her tummy and she moaned...I turned around and yelled at the nurse and then left the unit to get my head together.

I decided to visit the lactation consultant who has been helping me, but on the way there I just lost it and burst into sobs....The nurse manager for the unit took me to the lactation consultants office and I got it together so that I didn't seem like the complete nut that I am...but I had basically decided that I was...(OK....get out the haldol)...going to come and just take her home. I just know that if I could get her home and feed her on demand that she'd do better. Obviously, that wasn't a rational idea and no...I didn't end up trying (or I suppose I'd be writing from a jail cell somewhere in central mn Mr. Green ...which might not be so bad considering how shitty things are at home right now).

I talked to the neonatologist and he decided to lower her feeding to 50ml and said that if she lost weight we would increase the caloric content (not volume) of her feeding.

By this weekend, she was taking 48ml pretty regularly and I really thought I'd be taking her home tomorrow. We are at 1 month today...1 MONTH. She is 37 weeks/3 days now corrected. It is TIME for her to come HOME! Another neonatologist that saw her this w/e wrote in her chart on Sunday that she'd be home in the next couple of days!

I took her car seat in and she and it passed...she passed her hearing screen...we built her bed and bought newborn diapers etc....and then...I went in to the NICU today.

grrrrr

The doc from the weekend came to talk to me personally (ours is now on vacation)....because he "knew I'd be upset"...ya THINK!

She did not gain enough weight last week and is not growing enough. HE decided that instead of increasing caloric intake we are going to DECREASE caloric content and INCREASE the amount. Hey, dipshit...what part of "it is too much for her do you NOT understand??????" I have just had it! Noone here is consistent....I rarely see the same nurses because they work 12 hour shifts that rotate between days and nights, float peds and are always assigned to different 'pods' of babies. One nurse forcefeeds her, the next gavage feeds her for an entire feed if she 'seems sleepy'....good GOD! Do they HAVE a system? Do THEY???? I hate them...I do....I am back to contemplating just...taking her. Surely I can have her discharged against medical advice. It would embarass Thomas to tears, but...I don't care.

~sigh


And as to things at home...if Thomas and I aren't sending each other "I want a divorce" text messages, we're uttering it at each other under our breath.

It's all just too much.

The kids don't listen, the house is chaos and my mom leaves tomorrow....So now I'm trying to find daycare for Aidan and am trying to plan KidStop for Amanda and Alex.

I may be leaving Amanda in KidStop for the summer. Confession number 1 million...I can't deal with her anymore....I wish that I could, but she has become so outrageously difficult that now she will need therapy just to get over the trauma of how awful I have been to her lately.

She has treated my mother with horrible meanness and disrespect. Today was the tip of the iceberg for me...I can't even LOOK at my daughter anymore without screaming at the top of my lungs at her. She can be in KidStop or she'll end up in long-term therapy years down the road...I quite frankly don't even give a rip anymore how awful that confession sounds (though I might after I hit submit).

She tried out for a play today and got a great part. She was so excited and we were all so excited FOR her...she wanted this SO much and I wanted it so much for her...because she needs something positive.

She has treated my mom like dog poop for the last 5 weeks (thanks in part, I believe, to Thomas treating my mom like that) but after we picked her up from play practice today, my mom offered to take her on a clothing shopping spree to celebrate. (Amanda now refuses to wear most of her pants because they "touch" her butt Rolling Eyes ). Amanda refused to go the minute my mom left the room..was making faces at me, rolling her eyes that she didn't want to go, begging me not to force her to go with her *gasp* grandmother anywhere, etc.

So I pretty much told her that she was not participating in the play, that I don't like her anymore, that I'm apalled by her behavior and want nothing to do with it or her Shocked and sent her to her room. If she comes downstairs, I suggest someone dial 9-1-1 because one of us is not coming out of this house alive. I'm SICK of her sass, her rudeness to my mother and to me, and her spoiled brat attitude...I've absolutely had it.

This child will NOT survive adolescence in this house living with me...unless she changes fast. I refuse to do this anymore. It broke my heart for my mom...who has done everything to try and win Amanda over while she's been here. Amanda is just rude and inconsiderate..and it is completely unacceptable. I don't care what "stress" she has had going on...I don't.

My mom went to Kohl's by herself to take back the pants that she had bought for Amanda a couple of days ago that didn't fit...and I thought my head would explode...of course, I was screaming and yelling as both the Schwan's man and a neighbor rang the bell and I almost went to the door and said "leave me the fawk alone"...but I managed to control myself enough to be polite.

So yes, it's official...I've lost my damned mind....totally and completely lost it.

I sure hope my insurance will cover psych meds and therapy for this family....

kris

[PrincessFiona]

May 16, 2006

9am radiation

drive home and get my mom's stuff into the car

9.45am drove mom to hospital to say good-bye to Zoe

drove to bank while she was in the nicu

10.45 headed over to the airport to drop off my mother

11.15am drove to Alex's school to sign him up for KidStop and to Andrew's school to drop off an asisgnment. He was sick with diarrhea today and it had to be turned in today.

11.30am drove to feed Zoe at 12...took Aidan with me to the NICU....a 2 year old in the NICU...need I say more?

12.30pm went for coffee with Aidan and Thomas

1pm drove home
2.15pm got gas and drove to fee Zoe at 3. Three pm feeding was a disaster. Aidan tore his socks off and threw them somewhere (we never recovered them) and then screamed at the top of his lungs in the NICU several times "I hate you mommy" "I've HAD it" "You Stupidhead"...any nurse that tried to help me out was met with similar comments. To say that I was mortified is an understatement. We didn't even manage to finish the feeding. I then took him over to the pedi play area...not because he deserved it, but because my head was pounding and I'm sick of driving.

3.50pmdrove to KidStop to pick up Alex...who "hated" it and said "I hate my life"...because all he did was sit around on the playground and wait for me to pick him up. (I saw him playing though Wink ) Ahhhh, mommy guilt. We waited in the car for about 15 minutes and then I picked up Amana from play practice.

4.30pm...slumped down onto the computer at home....with a cough, sore throat and headache....oh NO! Rolling Eyes

5.30pm....still trying to post after multiple phone call interruptions....and am now getting ready to leave for the 6pm End of the year girl scout picnic.

Thomas will feed Zoe at 6pm, we'll skip the 9pm and...I'll go to the midnight feeding (and wear a mask to make sure that she doesn't get sick).

I'm beat!

thud

I have been looking into german aupairs and *might* have found someone willing to work June-August...it's super expensive...but dh is willing to do anything at this point.

I was going to send Aidan to a friend who does childcare for a few hours today, but she had the stomach virus like Andrew....she called and said she could take Aidan tomorrow.

Edited to add: Today when I came in to see Zoe, they informed me that one of the nurses had weighed her washcloth after she "took" a 60ml feed and they figured out that she had literally spit out more than 30ml of her feeding! Shocked I've known this for awhile though and have never understood why we would keep feeding her when the milk is dribbling down her chin/face/onto the washcloth just for the sake of saying that we "did it".

She went to the doc and he increased the caloried content again and reduced the amount. Rolling Eyes

No wonder I'm losing my marbles.

kris

[PrincessFiona]

A little picture update:



Aidan is still asking himself "who is this baby and why did mom set up a crib for her in her room?...I wonder what will happen if I poke her eyes?"


Zoe is already busy defending herself...."Don't you poke MY face, buddy" (just check out her tongue!)



Little Miss Zoe relaxing in her little "baby Zoe" onesie from the store whose name dare not be spoken.



Amanda turned 10 on May 2nd and we had a birthday party for her a week later....this is her singing happy birthday to herself! She's quite the ham! She also just got her first medium sized role in the play Alice in Wonderland. She wants to be a famous actress. Judging from her drama queen behavior this year, I'd say she's going to be very successful!!





Amanda's birthday...we celebrated as a family at Space Aliens. Notice Alex's super frown. I can't get a good picture of him lately....He's just been so down and grouchy.




Alex playing a game for tokens at Space Aliens. I'm going to have to get some more good pics of him and post them.

[img]http://i21.photobucket.com/albums/b271/kmmath/b6835a57.jpg[img]

Andrew after his Math Masters competition.

Funny Math Masters story....I was excited that he was chosen for math masters this year but haven't thought much about it...at the competition though, the parents were all super-competitive. My mom and I were laughing that this competition wasn't a Harvard admissions test or something and kind of rolled our eyes at the other parents and how truly seriously they were taking this. They were talking about study books, etc and I just laughed. Come ON, people..it's 5th GRADE math masters.


Then they had the awards ceremony. Andrew didn't place..and I turned to my mom and said..."Where can I get that study book...we are soooo working on this this summer!" Ahhhh....mommy competitiveness!

[PrincessFiona]

Quick update.

Apparently, Zoe wrote her neonatologist a letter last night. I hear it went something like this:

Dear Dr. X

Please send me home. I promise to eat and grow so that I will soon be strong enough to steal...I mean borrow...my big sisters markers and color on moms walls. Also, my two year old brother has decided to take over my crib. We all know that I can not have THAT.

Thank You.

Sincerely,
Zoe Math

Now, I am of course just guessing as to the exact content, of course. Mr. Green

Soooo...The dr. had sympathy for mom and we talked about what is going on. Here is the story:

Zoe continues to improve on the amount of the bottles she is taking. She is really getting the hang of it now. The problem is her weight gain. Despite taking in *gulp* adequate calories (outside of what she is spitting on her washrag, of course) her weight gain continues to be what he calls marginal.

She is weighed daily and last night she gained 2 grams. Apparently, she is supposed to gain upwards of 30 grams (1 ounce) a day. I thought it was ~5grams. I was wrong.

I asked if her length of stay for a feeder and a grower was unusual and he replied that it was definitiely on the extreme end of the spectrum. She has had no real medical issues.

I asked if she might possibly have brain damage which is affecting her ability to learn to eat etc. He replied that it was a possibility but that we are all also very sensitive to Zoe because we know her history of exposure to chemotherapy.

He said they will be watching her after she goes home too. Apparently, they do follow-up 6,12,18, 24 month and 4 year visits to the neonatologist if born early.

Obviously, my paranoid, freaky mom concern is that she has brain damage.

I also took in some information about anemia of prematurity that I had found online and printed out to discuss with the doc:> . She currently has some anemia with a hematocrit of 30.4% and a low reticulocyte count. I found some info that says that poor feeding, poor weight gain and lethargy can be symptoms of anemia. I pointed this out to our poor doc and he said he does not think that her hematocrit etc is low enough to cause it. It is, however low enough to be listed as one of her problems...but I dont know enough about all of this to formulate an educated opinion one way or the other.

They have upped her calorie content to 27 calories and if she is able to toelrate it well and gain weight over the next several days then she will be able to come home. We will likely need to rent a scale to monitor her weight daily.

Kris

[PrincessFiona]

May 21, 2006

Guess who I'm holding in my arms as I type this from HOME?

Yesterday, a lightbulb seemed to go off in Zoe's head, and she took all of her bottles continuously...and gained 63g. This morning the nurses assured me that they would beg the attending physician for me to be allowed to take her home because she had done 24 hours of consistent bottling with weight gain. The difference in her eating behavior in a matter of 2 days is just startling! She went from being NG fed several feeds to sucking them down in a matter of 48 hours!

I was out with the boys buying individual sizes of pansies for the NICU nurses, little pink baggies for them to go in, little rattles and baby ornaments to put with each flower Mr. Green and Thomas called me to let me know that the NICU had called and I was to call back.

When I did, the nurse said that the doc had been by to examine Zoe...

"AND...."

"Oh, Kris, there is a little girl right here waiting for you to come and pick her up."

"right now?"

"right now!"

I cried all the way home, cried while I put together the pansies and rattles...and cried on the way to pick her up...Then I shed some tears in the NICU with her very first nurse....the first to take care of her and the last to see her go....She is also a cancer survivor and she just held me and rubbed my back.

The doc came by and was thrilled to be able to finally send her out the door. He was happy for me and happy for Zoe....even the families of the other babies were celebrating for us.

On the way ou to the van, I found out that the little baby who had been so sick with sepsis had died after being transported to the cities.... cry That day in the NICU, I was indeed listening as the mother lost her son....

Today is a happy day...and a sad day. I am full of so many mixed emotions....I had many days where I did not think that Zoe would be born alive...others where I was optimistic and felt things would be fine....I am so happy to bring my little girl home...so sad to realize that the mother I met that day did not...

We will continue on the 27cal...and eventually will move to 24cal and then down to the 22cal....we will follow up in peds and with the neonatologist in 6 months.

I can't believe that this journey is almost over...I can't believe that this awful thing has happened to us....

I can't believe that she is home.

Kris

[PrincessFiona]

May 26, 2006

It's done. I have officially finished my very last radiation treatment. It seemed so surreal and anticlimactic. I went in just like every morning except that today I brought the baby in because everyone wanted to see her. I got undressed, laid on the table...and it was over. I got back up, got dressed , was given a 'diploma' for my 'graduation' and then Thomas and I walked out of the cancer center hand-in-hand through the same double doors that we had entered so fearfully just a few months ago.

I expected the skies to open up with brilliant color, the angels to come down and sing, etc Laughing Instead, the sky was the same crisp, clear blue as it was when we walked in. Our cars were where they left them...the construction workers building the addition to the building were still hammering away oblivious to this major milestone in our lives....

Today...life officially went on!

[PrincessFiona]

May 31, 2006

Thud....

That's where I was at this weekend. I hit a psychological wall and have been trying hard to bounce back and find my balance again.

After my last treatment on Friday, I just sort of assumed that life would be different...I have been through so many changes over the last several months and have gained insight into so many things that I think are important. Despite the treatments and uncertainty, I had found myself feeling more positive, hopeful and strong than I ever had before. Many of my thought processes began to change and I assumed that my life "after cancer" would be one in which I was enlightened and self-actualized.

It came as a bit of a surprise to me then that I was feeling depressed....not just depressed, but really out there. The situation with my neighbor was a catalyst for this, but certainly wasn't the cause. I found myself crying, rageful and downright scarey in my inability to cope with the situation.

In many ways, I feel like I stepped out of my life for this past 6 months. I don't really fit into my old life, but I don't know how I want my "new" life to be.

I see the damage that has been done to my family. My marriage is suffering immensely. We spend too much time now by ourselves...even when we are home together. He watches his shows downstairs and I sit upstairs online or with the baby. The kids all do their own things too. We all live in this house but ... not together.

My 2 year old cries if I look at him cross-eyed and has been allowed to consume way too much Nickelodeon, my 7 year old completely ignores me if I tell him something and leaves the house to go to friend's now without permission or telling me where he is going. My 10 year old daughter....well, let's just say that the pre-pubescent situation that existed before the cancer issue has snowballed into behaviors appropriate for the TLC Movie of the Week and my 11 year old spends day/night either on the gamecube or online.

These are all changes that happened because we were less attentive and available. We let things slip because both Thomas and I were so emotionally and physically exhausted at times. They are all things that will take time to fix..and I'm beginning to realize that physically being finished with treatments is now just a stepping stone to recovery for both me and the family.

The emotional "side-effects" of facing my own mortality and the pregnancy during it all have blind-sided me. I have sort of had a mental "to-do" list where I have checked off each milestone as I hit it.

Chemo...done
Baby...done
Radiation...done

Done, right? Wrong.

Life is precarious. Life is uncertain. Life could be over before I am ready. I could die and leave my children without a mother. Life is unfair. Bad things happen that can devastate my family.

I struggled with shortness of breath again yesterday. It has been months since I have felt unable to catch my breath and it was terrifying to me. Though I am certain that this is a side-effect from the radiation, it unnerved me all the same. In the back of my mind I couldn't help but wonder that the last time I felt 'short of breath' it was the beginning of this fight. I don't want to become paranoid about my health and worry that any time I can't 'catch my breath' that the cancer has returned, but I can't help it. Is this is part of the "new normal" that people talk about?

Intuitively I know that because I just finished radiation the cancer is gone and the likelihood of being cured is very high. But life IS uncertain, bad things DO happen...and my life is forever punctuated by the knowledge that it is important to live each day as if it were my last.
_________________

[PrincessFiona]

June 13, 2006

I'm going through my "I don't give a shit" phase. Shocked Maybe I'm just depressed or feeling overwhelmed, but it is shocking to me to suddenly feel so cynical and angry. I have very little tolerance or patience for other people and so for the most part, I am avoiding my phone or purposefully getting together with friends or acquaintances...I'm afraid that my negativity now could end friendships or reflect poorly on me....I can't muster up the energy to even pretend that I'm interested in problems like "what should we name our puppy, I got a B in ochem, or my husband has call this weekend and it's so unfair". I wish I could be interested, but I'm not.

Come to me if there is a true crisis and you need comfort and help...otherwise, I suggest you discuss your puppy with a friend who cares. Shocked Isn't that terrible? I realize that these are important thoughts and problems for the people around me and ordinarily I would want to discuss them and the meaning of life endlessly (as my long distance phone bill can testify), but now...I am painfully silent...I can't bring myself to talk about my own grief and struggle. There are simply no words.

I feel so overcome by grief and sadness that I don’t know what to do with my feelings. I can’t seem to articulate them (hence the failure to update my blog) and as a result I am an emotional wreck. I am up one minute and down the next…and most of the time I feel like I’m barely hanging on but I don’t know why.

My marriage feels like it is falling apart. Funny how we were able to survive residency and fellowship (ok, the fellowship part was a just barely) but now we can’t find a way to come together and talk without screaming and swearing at each other regardless of who is around. Our kids have heard the “D” word on multiple occasions, and have been subject to screaming, raging fights almost daily. From my perspective (the important one, of course Mr. Green ) he just doesn’t “get it”. I know that he was affected by this whole trauma, but now that he has convinced himself that I’ll be cured he just wants things to go back to how they always were…and my life just isn’t the same…it never will be.

I asked him to take time off because I desperately need some down time together as a family. He did…and this has meant that every day he sleeps in until almost noon and then wonders when things are going to get done around the house (clean the kitchen etc.). Never mind that I am taking my 11 year old to summer school by 8am (he doesn’t need any extra help, but wanted to enroll because his teacher from this year is teaching it. Half of the summer school students for 5th grade are from her class.). Then I take my daughter to swimming at 9am, my other son to swimming at 10am…and pick up my 11 year old at 11.30. I do this all with my 2 year old and newborn in tow…. I do more when he is sleeping in than he does all day long!

I ask him for time together and it’s like I’m expecting too much. If I’m being fair though, I’m not asking for what I need because I don’t know. I want him to be able to read my mind and know that I need him to sit with me without talking, put his arms around me and let me cry for no apparent reason….I need him to intuitively be able to anticipate my feelings and ‘know’ what to do…and that’s not going to happen, of course…because even I don’t know what I need.

So instead, we fight about everything…the laundry (I beg him not to do it because he just stuffs the machine full with everything no matter what the fabric or colors and then he 1. leaves stacks of clothes to be folded in baskets in the kitchen and 2. ruins clothes), the kids (I feel like he undoes/undermines every disciplinary action that I take)…you name it.

I’m a stranger in my own home. I feel like crying all of the time. I feel so sad that I can’t stand it. I just want to run off with the baby by myself and spend time marveling over her.

I’m sad because I’m significantly overweight and instead of losing weight since the baby arrived, I have gained.

I’m sad because my dream house in my new neighborhood feels tainted by my neighbor and her craziness. Most recently, she resorted to throwing her metal deck furniture over the deck 10 feet to the ground below and then ran around her yard swearing (our girls had another run-in and she was angry because she felt she had to “f-ing babysit” in her backyard). My dad was visiting and he asked her to tone her language down and the result was more swearing and hysteria which included her screaming “we were here first, just move”. She then paraded neighbors through her backyard and complained about us. I got this under control by reigning in my dad and stepmom while they were still here (both hotheads extraordinaire) and by waving/smiling at her. Interestingly, our girls have already made up and are playing together.

I’m sad because I can’t stop thinking about the baby that died. Every time I hear “Bad Day” by Daniel Powter I feel like I am drowning in grief. The song kept playing on the radio while the mother was sobbing “No, Please God, No” as they tried to stabilize his little body for transport and I can’t get it out of my mind. In my memory, the song just loops again and again. I wish that the little boy had not died…..I imagine the grief that the mother is still feeling and I ache to know her…so that I could comfort her in some way.

I’m sad because my chemo buddy (we did 4 of 6 chemos together and have ironically known each other for 4 years and were diagnosed with lymphomas within weeks of each other) has relapsed already and is preparing for a stem cell transplant. I visited him in the hospital this weekend and I had this awful feeling that he isn’t going to make it.

I’m sad because I have this awful fear that I’m not going to make it….even though I have a very high possibility of being cured. It’s silly for me to even feel this way given the high cure rate for my disease. There are people out there with much less optimistic prognoses. Yet every ache, every physical phenomenon that I notice makes me feel frightened.

My grandmother got a real kick out of the time that all of the numbers on the clock were the same: 3:33, 4:44 etc. She would always point it out to me and I remember her even waking me up when I visited in the summer to tell me “Kristen, look, it’s 3.33”. Lately, every time I look at the clock it is 1:11 or 11:11 or 2:22…and I can’t help but think that she is sending me a message. For awhile, I worried it meant that I would be with her soon…then I saw a double rainbow a week ago….It was literally two individual rainbows one on top of the other...and I could see the rainbows from start to finish. I decided that that was a hopeful sign and that my grandmother was telling me things would be ok. Every day I look at the clock now and feel her with me.

We have decided to go on our regular vacation to WI early this year. Usually, we go at the end of the Summer (and we may still go in August as well) but tomorrow we are heading out and will be gone until Sunday. Hopefully, this will provide me with some of the relaxation and emotional healing that I need.

[PrincessFiona]

June 27, 2006

I've been terrible about updating lately, but I had to let everyone know I haven't fallen off of the end of the earth.

Things are much better at home...and the vacation really helped us to relax and get a fresh start. Despite some serious neighbor antics...again...we are on the road to recovery, I think.

On the way to Jellystone I had time to do a lot of thinking. As we crossed the border of Minnesota and entered Wisconsin, I could literally feel the layers of stress peeling away. I began to feel so relaxed and hopeful. For the first time, I allowed myself to feel like everything really is going to be ok. I also realized that right now, my whole family is so fragile that I have to really set the tone. When I am hopeful, positive, upbeat, everyone gets along and has good days and dh is is more relaxed and positive....if I am feeling gloomy, all bets are off.

I made a consious decision while I was on vacation to be more calm and to think a lot more about what I say/do before I take any action. I know that it can't be only up to me, but maybe right now this is what the family needs in order to start moving forward.

I've also noticed that, Amanda's "mean girls" attitude is slowly disappearing. She is doing community theater this summer and got a big role playing Barbie in a Barbie and Ken sketch Laughing and she's thrilled...

We've turned off the tv and have taken to watching Brady Bunch videos at night! bolt The kids love it though and I think that the themes are relevant to the conflicts and problems that they have today...just without the slinky outfits, obscenities etc. Now our big goal is to get rid of the computer addiction in this house!

Vacation pics coming soon!

kris

[PrincessFiona]

July 04, 2006

It's been awhile since I've updated. We just have too much going on this summer and I don't seem to be able to find much time to get online. The kids are busy with activities and I'm either in the van driving them or getting them ready to go. We have soccer and Theater going on and then we're spending other days at the local beaches and parks after we do our german homeschooling stuff.

I'm very stressed right now with the upcoming PET scan looming larger and larger. Wednesday at 7am the games begin again. I've been trying to prepare myself emotionally, and am working really hard at relaxing and working on the kids and trying to bring us closer together again. It isn't easy. I'm struggling emotionally to cope with a friend who is now having to go for a bone marrow transplant after his chemo failed him. Quite honestly, I lack the courage to face that....and I don't know how he's managing it other than I assume he is simply putting one foot in front of the next to make it through each day. What choice does he have?

My mom called to tell me that she had been at a Nurse Practitioner convention for CME and had talked to an NP from MDAnderson who said that they have seen an increase in Primary Mediastinal Lymphoma in young pregnant women....They had cared for a few this past year or so Shocked She said "I don't want to frighten you, but" (you know that's bad news!)"the women had activity light up in their PET scans post-chemo and radiation, Kris". The women are on a "watch and wait" protocol at MDAnderson.

I know that we wouldn't be doing watch and wait here...I'm sure a positive pet scan means another biopsy(I shudder at the thought)...and could potentially mean more chemo and...a bone marrow transplant....and the idea absolutely brings me to my knees. Please God don't let me still be sick! Please! I'm absolutely terrified of the results!

Of course, the PET scan could be clear.....but I won't know until wed night or Thursday afternoon. For all I know, Wed. night we'll be partying it up around here! Smile

My dad said "I know it will be fine, Kris, because everyone we know is praying for you and everyone at our church and their churches. We have so many people praying for you that you will definitely be ok". I told him how wonderful I thought that was and not to minimize it...that..a lot of people were in that situation and still didn't get better...that sometimes God says "no" for reasons that maybe we don't understand...and that I am afraid. He understood. He is just scared too. We all want to know...but we don't want to know.

And you're not supposed to talk about this stuff....this is the part of having cancer that no one really wants to know about. People want to see you smiling and courageous...they want to talk about how strong you are and how you always have something positive to say. They don't want to see the reality though and...I don't blame them. It's uncomfortable. It's scarey...It's too close to home. Despite everything I've gone through, I struggle to talk with the friend I have who is going through the bone marrow transplant. It's easier for me to talk to his wife....I can read his mind...I know he's terrified of dying and I don't know what to say.

There are few real resources for people here to deal with it all. There are some support groups, but they are poorly advertised and not well attended. For the most part, people manage on their own...and I think most people do ok.

This is such a huge life-altering thing... I can imagine that my life will never be the same...and...I can also imagine that once I'm 'cured' it won't be politically correct to talk about this experience and the highs and lows. If I had been injured bunjee jumping and it changed my life for the better, people would want to hear about it...it would be "ok" to talk about. But cancer? I think people would rather you not talk about something like that.

There are many things in life that fit that bill. Most people have some sort of traumatic or difficult experiences in their lives that make them who they are. Often times it isn't ok to discuss even years after the fact because it makes other people feel too uncomfortable.

I have decided that I will definitely be pursuing a graduate degree in psychology when I am better...because I want to be able to listen to people when they need to talk about these life-altering events that they feel they have to keep bottled up...I want to help people to start putting their lives back together and to find hope.

Of course...I'll need to put our lives back together first. Wink

Amanda is up and down and up and down. We finally sat back and forth writing each other letters and she told me she is mad at me because I ruined everything...because of me, our family has struggled...I have been depressed and impatient, Thomas has been stressed out and worried...she has felt unloved and unhappy. The result? She is taking her pre-adolescent angst out on us. Not a day goes by that I don't hear "WhatEVer" 20 times...that she isn't stomping out of a room and being angry. She is hypersensitive and any comment sends her over the edge. It is very hard to live with and both Thomas and I are trying very hard to keep from completely losing it!

Crazy neighbor has stepped up her antics with accusations against Alex (age 7) and the rest of our kids that are completely out there. She has attempted to slander us to our neighbors and it has frankly been...a horrible time...a nightmare. When this all started, her boys came over to our house with the mom and we all sat down. The boys said that they had made up the story. Crazy neighbor was very upset when the boys didn't stick to their story at our house....and continued to tell the story to others and embellish it. When I refused to let our children play together anymore, she became irate with me on the phone and threatened to call the police...I told her I thought it was a great idea and that she should. She did....nothing happened.

Her boys were at a neighbor's house and that mom asked about everything going on. Again the boys said that it was made up....but the stories persist.

I don't know what possesses this woman to act this way. I now understand why she is on disability for mental health problems. Obviously, she is seriously disturbed. Despite knowing this, I'm a wreck. I can't sleep and I'm feeling very flushed and short of breath. I know that this is probably stress hormones, but the shortness of breath terrifies me and I find myself constantly obsessing and worrying about it.

Thomas is doing everything possible to help me relax. He sits outside with me while the kids are playing, plays soccer with us outside...hugs me, tells me how much he loves me....and it helps...but it doesn't take away the fact that I feel so betrayed and sad..that I am so sad for Alex...I'm afraid to be out in my backyard by myslef because she's such a loose cannon. Her son had Alex's Minnish Cap video game and he offered to return it. When she heard him say that she screamed "No you won't". The next morning, we found it ripped to shreds and thrown over the fence into our yard. She is scarey. I don't have the emotional reserves left to deal with it.

Zoe is doing well. She is up to 8 pounds 14 ounces...and is still struggling with anemia (hemoglobin 9.1)...so we're going to up the Iron. She is also constipated and is taking prune juice..so...she is stink....y! Laughing She's a super toot machine. Laughing

I have tons of pics to upload...I just have to find my cable...then I'm going to have a "catch up with our family" photo page!

[PrincessFiona]

July 6, 2006

We've had a great couple of days! Having Thomas off really makes such a huge difference for me. He had an extended weekend and didn't go back in until today..which left us with Mon, Tues and Wed. to hang out and have fun. We sat on the deck each morning and had our coffee, played soccer with the kids and had time to talk and just...hang out. I definitely needed this to help me recharge my batteries!


e more I push/nag and say things the worse it gets throughout the day. I am realizing that what works is to say something about it one time and then ignore it and the behaviors....and it goes away more quickly. I'm going to have to remind myself of this multiple times, I know...it is very hard not to react.

Here's the vacation picture update I've been promising:


Aidain in the fountain.

Aidan and the water slide (his favorite thing!)

Cooking in the rain!

Aidan Swimming

Alex Swimming

Amanda and the Campfire

Preparing for the Water Balloon Wars

Sleeping in the Loft

Papa Reading (of course!)

Andrew gets it with the water balloon

Zoe

Zoe

Alex and his moth (our little bug collector)

Waterslide (Andrew and Aidan)

The Paddle Boats

Amanda Swimming

Campfire

Amanda and Zoe



And of course...Thomas and Alex preparing for the World Cup...

[PrincessFiona]

It's official...the word coming out of my oncologist's office yesterday afternoon was most definitely remission.

R-E-M-I-S-S-I-O-N

I haven't been able to wrap my brain around it yet.



I went into my PET scan on Wednesday expecting the worst and hoping for the best. I got a good night's sleep and just decided that I couldn't change the results and so I needed to be prepared for whatever would happen.

The results initially that we were told by the radiologist were "remission" but a later look at all of the lab results was a little confusing. There were hot spots still on the tumor, bone marrow and my neck and my white count was down (3.4) as were my lymphocytes. So though we trusted that the radiologist was probably right, we couldn't help but worry that *maybe* there was still something.

I have continued to have difficulty getting a full breath and have chest pain at times and it is eerily similar to the initial symptoms that brought me in.

A trip to our oncologist yesterday afternoon confirmed that the bone marrow activity was likely radiation rebound, that the white cells weren't a terrible concern (likely early morning blood draw effects...go figure) and that the regions that did light up were <2SUV and were not of concern.

The chest pain/shortness of breat/difficulty drawing in a full breath could be radiation pneumonitis or could be permanent effects of the large size of the tumor and remaining scar tissue.

I have access to a great before treatment MRI picture side-by-side with my after PET and when I finally have it on my computer, I'll upload it here.

You have all been such a wonderful source of support for me throughout all of this. I don't think I could have gotten through it in one piece without your willingness to listen and comfort me....I love you all so much.

Thank you for being there for me!

Kris