Life In The Real World

[PrincessFiona]

I'm not sure why I feel the need to write about this....except that it's been on my mind since yesterday.

I went out in the morning with Aidan to our regular 'hotspot'...the toddler play area in the shopping mall. . He loves going there and climbs and plays like a wild indian.

I was sitting watching him and was slowly joined by a group of young adoptive moms. They were busy chatting about their new 'referrals' while their little ones jumped around and played with Aidan.

One mom piped in that she had just turned down a referral...a baby girl born at 32 weeks who had spent 2 weeks in the NICU. "They say the baby is fine, but I just can't take the risk...what if there are some defects and we don't know until years from now. Being born a week or 2 early is one thing."

"I know what you mean," piped in another. "There are people out there that WANT those special needs kids and they should adopt them. I'm not equipped to deal with a child with any problems."

I listened for about 10 minutes before I just had to get up and leave...I am pregnant with a baby that I will "take" if she is blind, deaf, has neurological problems or developmental delays.. . I just want to hold her in my arms and feel her soft skin against my own.

I felt so outraged that I was speechless...even though I tried to understand the perspective of these moms. It would be nice if life were so easily planned...but it's not. There is nothing about life or parenting that is as predictable and 'neat' as this small group of moms imagine.

I felt so vulnerable as I left. I wanted to look back and see if they were staring at me now that I had stood up and revealed myself to be hairless and pregnant, but I just kept walking....

kris

[PrincessFiona]

I know that down times are to be expected...I do...it's just that the last week or so has felt low. Today I had 3 dr's appointments all in a row. I literally spent from 8.45 until 12.30pm in the Medical Office building with my 2 year old...shuffling from room to room...and it all felt like such a colossal waste of my time.

I feel angry right now at the medical profession in general now, for no good reason. I suddenly understand how people with chronic diseases can become so angry and grouchy.

I had a blood draw at 9am..followed by OB at 9.30...nothing new and I'm no closer to having a clue about how things will play out. I'm sure the doc feels the same way...she basically said that in a week we'll do the steroid injections and then play it 'by ear' after 30 weeks....but to me it is just more of the yo-yo on the string effect. I know that she is just giving a best-guess and that she can't provide me with the certainty that I need...but I'm just so tired of worrying and not knowing.

10.20 Oncologist...and he was either in a bad mood or in a hurry. He pretty much walked in the door, told me that my bloodwork was good, that the tumor had continued shrinking based on my last x-ray and that I'd be scheduled for another mri after this next chemo. DH asked if it was normal after 3 cycles for the tumor to still be there and he said he expected that there would be scar tissue remaining after the 6th cycle due to the large size of the tumor. Whether or not the remaining cells would be 'viable' was another question but he said that they should be 'sterilized' by the radiation. I asked what percentage of the 80% that go into remission end up having a recurrance and he guessed it at 10%. That number struck me as being surprisingly high. I asked if they had done any molecular biology studies of my tumor cells and he looked through the chart, said no and then..got up and left...just...left...

Apparently, the appt. was over. We used our 10 minutes. I just felt so...bad...like I offended him or I am annoying...I even started thinking that my weight had something to do with it which is really just silly....but it was so odd the way he ran off and left.

I asked dh about it and he made excuses "maybe he's busy, maybe he's having a bad day...." I tried to tell dh that it doesn't matter. Medicine is a 'service industry too' and he got upset with me. "You don't go to the dr. to feel good, you go to get information and that's it". Ummm...ok..spoken like a true...doctor. This is the same guy though, who will get his knickers in a knot if the waiter in the restaurant doesn't refill his drinks etc. To placate me, he assured me that HE doesn't do that to HIS patients. Ummmm...ok...sure!

So then it was off to endocrine...my sore spot right now for mysterious reasons...All of my blood values this week have been normal. Last week, I had a few after-lunch values that were actually 122 or 124 instead of below 120, but I figured out that washing/drying my hands resulted in 'normal' 'scores'.

Actually, the whole 'measure the glucose' thing is a mystery to me. Last night, I measured my nighttime glucose and got a value of 147 This freaked me out, so I measured it again...different finger...and got 93 So...I measured it again and got 96. I decided to go with the 96.

This morning, I got up and it measured 117...so...I measured it again and got 87.

That's a pretty large margine of error there.

I told the endocrine nurse practitioner that I am not very concerned about my blood sugar right now but that I will be watching it next week when I get the solumedrol and prednisone.

She told me that if the doc was in today that she would have put me on INSULIN because of the 2 days where I had values above 120 after lunch..and because my morning glucose is in the 85-89 range and should be 60-90...it is on the 'high edge of normal'.

It's still normal though!!!! Apparently, I don't understand this well enough and I am, for some reason that I don't fully understand, really digging in my heals on this issue.

Maybe because I'm tired of issues, excitement, drama and all that? I'm tired of hearing one thing one week and the opposite the next week. I just want to run off on a vacation by myself for a few days...and pretend that none of this is happening.

I cried the whole way home from the doctor's office...after stopping in at Taco Bell for a #8 value meal. There was a song on the radio, I'm Already There...and I just sobbed through the whole thing...because I imagined that it would be what I would want my children to know if I died...that I'm still there for them..that I'm the sunshine in their hair...and the shadow on the wall....

I imagined my husband's grief and my children trying to go on and I just felt sick....even though I know that this isn't what is going to happen. This is a highly curable disease.

I cried because I ended up missing having lunch with my 7 year old today...even though every day I wish that I didn't have to go.

Why am I going through this grieving process now? You would think that the first few weeks after the diagnosis...even after the first round or two of chemo that I would have had this...but now I'm at the 1/2 way point...the tumor is shrinking and the baby is doing well...and now I'm falling apart? I don't get it.

I started seeing a therapist about a month ago and she basically pronounced me 'mentally healthy' (please, no wild, hysterical laughing here!)...then I went and saw her last time and basically every time I opened my mouth to say anything I started crying for no reason that I could think of. I'm crying while I'm writing this and I don't understand that either. Things are looking up so I'm supposed to be even more positive now.

How is that I was the one telling everyone else that it would all be ok a few months ago and now I can't seem to drag myself through the day anymore?

I'm Already There

He called her on the road, from a lonely cold hotel room.
Just to hear her say "I love you" one more time.
And when he heard the sound of the kids laughing in the background,
He had to wipe away a tear from his eye.
A little voice came on the phone, and said "Daddy when you coming home?"
He said the first thing that came to his mind...

I'm already there, take a look around.
I'm the sunshine in your hair, I'm the shadow on the ground.
I'm the whisper in the wind, I'm your imaginary friend.
And I know I'm in your prayers, Oh I'm already there.

She got back on the phone, said "I really miss you darling"
Don't worry about the kids they'll be alright.
Wish I was in your arms, lying right there beside you.
But I know that I'll be in your dreams tonight.
And I'll gently kiss your lips, touch you with my fingertips.
So turn out the light and close your eyes..."

Im already there, don't make a sound.
I'm the beat in your heart, I'm the moonlight shining down.
I'm the whisper in the wind, and I'll be there till the end
When you feel the love that we share, oh i'm already there...

We may be a thousand miles apart, but I'll be with you wherever you are...

I'm already there, take a look around.
I'm the sunshine in your hair, I'm the shadow on the ground.
I'm the whisper in the wind, and I'll be there till the end.
When you feel the love that we share, oh I'm already there...

Oh I'm already there...

[PrincessFiona]

I have been thinking a lot about why I suddenly feel so emotional. I guess initially things still seemed so "up-in-the air" and I felt the need to hold it together for me and for Thomas and the children. Now that I know that the treatment is doing what it is supposed to and that the baby is doing well I think I've been able to internalize that things really are going to be ok. I think I finally have given myself...permission...to let down my guard and not 'be strong' for everyone around me and for myself. I've looked at the whole situation and been a little shocked and sad....maybe I was just in 'survival mode' before...

Realizing this has given me a sense of inner peace. I don't feel panicked anymore about feeling sad or afraid...I think this is probably just a normal part of it all.

kris

[PrincessFiona]

February 24, 2006

My mil won't be coming to visit us again anytime soon. Actually, I told dh that if we do end up going to Germany at the end of this summer, I don't even plan on traveling near where she lives. Heck, if I have to pay for a hotel room anyway WHY would I go and visit HER? I plan on sticking to that too. As far as I'm concerned she doesn't even need to know that we are coming.

DH called his mom when we found out about the tumor, but before we had all of the diagnosing done. It was about 3am her time and in response to our 'news' she said:

"Did you get the package that I mailed to you?"
"Mom, did you hear what I just told you," dh said.
"Yes..but I mailed it 3 weeks ago...it should have already arrived."
He tried to impress upon her the importance of what he was telling her, but she didn't seem to understand. Then when he asked her to come back (GOD FORBID) to help us, she said that she couldn't because she had 'pulled something' in her back.

First of all...I wouldn't actually have permitted her to come because I don't want or need the aggravation and my very last concern is whether o r not the shoes in my closet have all been cleaned. But I was hurt for Thomas because I felt that he was asking her for support and she was rejecting him.

After that, we pretty much haven't heard from her unless Thomas calls HER. I had chemo on her birthday and so he didn't call her...and that netted a phone call from her in return. "What's going on?"
Thomas apologized for missing her birthday but explained about how busy we are with the treatments and appointments.

She just launched into a "WHAT were you two thinking?" lecture. "How on EARTH are you going to manage this? Kris will have a premature baby and 4 other children to care for and will be getting radiation...she will never be able to manage...I just can't beLIEVE you guys are doing this."

Thomas told her "Mom, we didn't plan for Kris to get cancer"

She never once offered her support to him or asked if that would be a good time for her return visit. If she actually thinks she'll be coming here twice a year again she is sooooo wrong. The day she steps foot in my house again is the day that I drive to TX to my mom and don't come back.

And just FYI...I most certainly WILL handle it....

She has not spoken with me once since my diagnosis ... even her best friend, whom she brought with her for the visit in October, called me to talk to me on Christmas Eve...She has never acknowledged this in any way to me....and it really is hurtful. Thomas makes excuses for her "Well, her church IS praying for you.....it's just not her nature to reach out."

He is so much more alone in dealing with this than I am. I have my wonderful friends from the iMSN and my family...my mom calls me every day and my dad calls me almost every day. My mom has come out and helped...my dad and his wife came up and helped...My son's teacher has been a big help too. I know that I do not have to shoulder this burden by myself.

He, on the other hand, has really no one outside of me to talk to...It's hard for me to pump him up or defend his mom to him when he is feeling down. I can't imagine ever abandoning any of my children like that...

[PrincessFiona]

Puberty has entered into our home in full fource!

Yesterday, Andrew's (age 11) class went to see the 7th and 8th grade production of 'Alladin'. He had been really looking forward to it. I picked him up from school and asked him how the show was.

"It was sooo HOT, mom!"

Hot? Alladin was hot? Hmmmm....He had a friend in the car with him and they immediately turned to each other and began whispering. I strained to hear but couldn't figure out what was so exciting.

After dropping his friend off, I asked again about Alladin..."So tell me all about it!"

"Mom, you could SEE right through the girls shirts...you could see their BRAS! And one of the girls...her skirt was so short that you could see her panties. It was so awesome!"

:thud:

Is this my little angel...the baby that I nursed for a year...whose diapers I changed...and who up until recently has been a quiet, shy little boy? It can't possibly be.

Of course, I was completely dumbfounded by this news and didn't manage to say any of the things that I thought I would once this time arrived. I stuttered out something and was interrupted by

"Oh, Mom...it's normal for guys to be attracted to girls. I'm just going through puberty. It's nothing to get excited about. Everyone goes through it."

I can't believe how grown-up he's getting...and I can't believe how inept I feel to deal with these new issues! Puberty? Girls? I'm not ready!

kris

[PrincessFiona]

blech...bad day.

Chemo side effects this time around...a startling shortness of breath ...now I have to go in for an echo.

And


26 week u/sound of baby showing my placenta is a Grade 2 instead of a Grade 0 due to calcifications. This is likely being caused by chemo....what this will mean is anyone's guess, I suppose...but the placenta is maturing too quickly....not good.


kris

[PrincessFiona]

Aaaaah, Saturday! It's so nice not to have to get up early and get the kids out-the-door for school! Yesterday, when the alarm went off, I was so tired that I just turned it off and decided to let the kids stay home. Within 5 minutes, Alex (7) came into the room and said "Mom, aren't you going to wake me up for school? It's a good thing I have my kids to keep me in line! I'm glad though that we have turned the corner on the going to school thing. He seems to really enjoy school again and all of his friends are just so funny. A few weeks ago at lunch, one of the boys was playing me a song by...making farting sounds from his underarms. I have to admit that I sat and listened politely...and was kind of amused. The lunchlady wasn't though and she came and put a stop to it. When she left, the little boy turned to me and told me that this summer he had entered a contest and won "for burping out the alphabet song".

Alex looks so grown up since he turned 7...when my mom told him this, he said "No I don't. I'm little..I'm NOT growing up". He still wants to be the little baby! Maybe that's why he still insists on having me come to school each day for lunch?

This has been a fun week. My mom was here visiting until Friday and we pretty much sat around and laughed in our pajamas until noon. The house stayed in disaray, but we had a good time.

Amanda (almost 10) developed her first pimple...a serious "I am here, look at me" pimple that pretty much was just leaping off of her face. We ended up even taking a picture of it because it was so impressive! She used some of my cover up to try and mask it and so she pretty much walked around all week with a huge cover-up spot on her nose that attempted to disguise a huge red zit. Poor Amanda! Thankfully for all of us, it's almost gone now! I'm so NOT ready for pubert to hit this house!

On a side note, I ran into her teacher yesterday at the elementary school when I was having lunch with Alex. She told me to "bring Amanda" with to conferences next week. Hmmmm. OK...I asked her what was up and she told me "I'm afraid I'm going to have to tell you some things that will make you want to cry".

Fabulous!

So...I asked for a preview. Basically, she didnt' tell me anything that I don't already know. My daughter is Lazy...lazy, lazy, lazy. She told me that Amanda is an avid reader and absorbs everything she reads...all of her reading comprehension tests (and they take many each week) are spot on...BUT that she doesn' try in any other classes...she is too busy socializing, and sneaking her books under her desk to keep reading.

The last science test that Amanda brought home was an A+ and we were all so thrilled that we hung it on the refrigerator....then, when I was cleaning up her room the other day, I found 3 more recent tests wadded up...all D's. D. My 4th grader is making Ds in science. The thing is..I don't know how she could have possibly gotten a D. The questions were matching and they were sooo obvious. It was as if she hadn't even read the questions or something. I showed the tests to Thomas and his eyes practically jumped out of his head...."is she...stupid?". We both sat there and pondered the question for a second before I jumped into defensive mommy mode and tried to cover up with a "how can you say that about your daughter" kind of a thing.

It turns out that when Amanda takes a math test, she gets an A..and when she turns in her homework assignments, she often gets a C or lower...because the teacher says she doesn't follow directions. The assignment might be "do problems 1-10 in set A, problems 12-20 in set B" etc....and her eyes will jump around and she'll end up mixing in problems from both set A and set B in each problem set. She does them properly, but they are the wrong problems. Again, I was told that she just rushes through her work so that she can draw, read or socialize.

Basically, the teacher wants to have Amanda come in so that she can 1. tell her what is good about her and then 2. tell her she is working below her potential and that she is lazy.

Did I already say 'Fabulous'! I believe in embracing our children where they are at in their lives...but lately, my 'embrace' of Amanda looks more like me ringing her neck than anything else

The best thing this week has been Aidan's potty-train-a-thon. This has been the easiest potty training I've ever been through. If I'm completely honest, my little guy who just turned 7 can still have an..accident... once in awhile when he gets too busy playing and doesn't want to take a break. He is of course devastated when it happens, but...it still happens from time-to-time.

Aidan (2) just decided he was done with diapers and now he is. We only had one accident all week in his big boy pants and it shocked him so much to get wet that he cried inconsolably. He is so in touch with all of his little bodily functions and cracked us up all week with his announcements of "I farted, I go potty" etc.

Last night, he was already in his diaper (I'm not even going to try it with 'big boy pants' in the bed unless...he sleeps on Thomas' side :> ) and he turned to Thomas and said "I go potty"....so Thomas went in and took him and ....he went. It's amazing...How did we get this lucky?

Something else that has really struck me lately is how grown-up Andrew is becoming. He's 11 and he is kind of on the cusp of adolescence....He came home from school one day last week, found me sitting on the sofa chatting with my mom, gave me a kiss on the cheek and asked me how my day was. He does things like this often. He is always asking how he can help out in the house and taking Aidan to play with him...he is becoming so grown-up and responsible. It is so exciting to watch...and so sad at the same time. We have such interesting conversations now. My little boy is growing up! I'm so proud of him.

[PrincessFiona]

March 7, 2006

My eyebrows look fabulous....seriously! I have always had bushy "Brooke-Shieldsy"(without the manicured look and great body, of course ) eyebrows...and over the years, my mom and some of my friends have politely suggested that I pluck them.

They have thinned out so beautifully! I know it seems like something silly to get excited about, but I never thought my eyebrows could....look so good! I need to take a picture so that when all of this is done I can fix them like this again!

I'm finally feeling better again too...though I have to admit being really tired. I can't figure out how much is pregnancy and how much is the after-effects of the chemo. I laid down with Aidan yesterday to watch Monster AG (Monsters Inc) and I slept soundly while he laid next to me watching. (Thank goodness there were no pens/crayons laying around!). Then, when Amanda and Alex got home at 2.45, I just couldn't get out of bed. Amanda took Aidan while I kept saying "5 more minutes". I had to get her to her geography lesson at the Montessori school by 3.30 and we ended up being 10 minutes late because I just couldn't get up. Part of the problem is that I simply can't sleep at night...the prednisone doesn't help, but baby dancing on my bladder is my biggest obstacle! I'd rather have her dancing away though..it gives me comfort...in...discomfort.

I feel like I'm on an emotional roller coaster some days...feeling hopeful about everything one minute and then hit by the gravity of it all the next. For the most part, I feel sure that everything is going to be fine. I even believe that we're going to get much farther with the pregnancy than my OB thinks. I just have this "feeling" that Zoe is going to be fine lately. At the same time, I am overcome with periods of sadness that seem to come out of the blue. I'm driving to pick up one of the kids or to an u/sound or to take Aidan to the toddler play area and suddenly I'm sobbing....It's weird.

My brother-in-law has been emailing Thomas lately. This is another new attempt on both of their parts to connect emotionally. In one of his last emails, he suggested that he had talked to my mil and that she *might* be willing to come...but that she was feeling too overwhelmed by our children. I wrote to Klaus (in an attempt to reconnct with him too) and then gently mentioned that though we love mil, her 'support' over the last few months has left something to be desired. I mentioned that Thomas feels badly after talking to her...that I know that she is also stressed out, but that right now Thomas needs emotional support and not criticism.

He basically wrote me back and told me he knew exactly what I was talking about it and he'd take care of it without her knowing that I'd said anything...since then, we've had a really nice email exchange.

This morning, I opened up my inbox to another letter from him: He wanted to let me know that I am the best thing that ever happened to Thomas.....(well, of course :> ) and it just made me cry.

I'm happy that we are all starting to connect again...I'm sad that this is happening...I'm hopeful that this will all turn out fine and that I'll become a stronger/better person for the experience...but...I wish it were behind me already. Some days I feel like I sit at home kind of counting the hours until the next day starts....only x more days until I'm 28 weeks kind of thinking.

Well, I'm off to the toddler play area!

kris

[PrincessFiona]

March 8, 2006

Three years ago, we had our family picture taken when we went to pick out our Christmas tree. It was bitter cold, and the breath of the person taking our picture actually..whited me right out of it. The entire family was there (with little Aidan in his car seat) but my face was covered by a fog of white smoke. The picture still gives me the chills. I thought it was a bad omen.

I wondered if it meant that I wouldn't be there next Christmas ...and the next year, when our pictures came out great, I couldn't help but reflect on my bad feeling the year before! "See, I'm still HERE...it was nothing more than a feeling" I said to myself.

Last year, as I approached the ripe old age of...35...I had that 'bad feeling' again. It helped me to realize that I'd had plenty of those 'bad omen' type feelings before and it had always been nothing...I got hooked on the song "Live like you were dying" .... I had the CD on auto-repeat in my car and listened non-stop. I told Thomas that I was worried that something was terribly wrong with me. He helped calmed my fears..."you're just a hypochondriac...you're fine!". I guess he forgot the first rule of medicine...crazy people can get sick too :>


Everything really seemed to fall into place for us though...we sold our house, went on vacation, got pregnant, moved into the new house...all of the pieces of our life seemed to be fitting together and I got that ... uncomfortable feeling again.

I tried to put my bad feelings aside. I distinctly remember thinking about how scarey it was to not know what the future held...how long I had on this earth, if I would become ill and from what. I contemplated a lot of 'big' questions and then finally put it all to rest. I decided that I couldn't control the future and that I was letting my worry about what *might* happen eat up the present.

Then this train hit us. The irony doesn't escape me. I finally decided that I was going to live until I was 100, that I was ruining my life worrying about whether or not something was going to happen to me and that I was just going to LET it GO....and when I finally did...I got sick.



It makes me wonder how I will manage the uncertainty that is sure to come with the next several years of my life. I think I've gotten past the whole shell-shocked new diagnosis phase...moved through the grieve about it phase...and now I'm wondering how to make life 'normal' again.

I'm a worrier by nature...I am having difficulty waiting for my March 14th MRI...I can't help but be riddled by "what if" thoughts despite having seen several x-rays that all showed that the tumor is now a shadow of itself. I know the treatment is working, and yet...what if...is in the back of my mind.

Then there is the radiation. Radiation to the chest can result in secondary cancers like leukemia. It's uncommon, but possible. Then there are two years of 2-3 month oncology appts for CT's, MRIs or x-rays.....that is a lot of uncertainty for this neurotic nut case to deal with.

I wonder if people who go through these experiences ever really feel 'safe' in their own bodies again?

[PrincessFiona]

March 13, 2006

I had an u/sound biophysical profile done this morning now that we've finally reached 28 weeks. Unfortunately, the amniotic fluid is way down (6.2 Normal is 10-11 and I guess 5 is 'deliver'). I've been admitted to the OB floor for a minimum of 48 hours. If by some "miracle" (not my words) the amniotic fluid goes up...I'll go home. Otherwise, we'll try and wait until at least Friday to hit 29 weeks...if not longer to take baby.

~sigh

Kris

[PrincessFiona]

March 13, 2006

It's been a long day. I have a slow internet connection so I am going to try and update things. I don't know where we're heading with everything, but I've managed to convince myself that the u/sound today was simply wrong. I think that she just made a mistake. I know that sounds like denial, but at this point I've heard so much bad news folowed by "ooops, things don't look so bad" that I really, really believe that tomorrow morning we'll be having a "look there is a normal amount of fluid" conversation.....it's possible, isn't it? Maybe there were pockets behind the baby that they just couldn't pick up on?

In the meantime, I've been given a steroid injection to mature baby's lungs. They'll give me the second one at 2am. [Roll Eyes] DH thinks I'm not coming home until baby is here...I think I'm going home tomorrow. We'll see who's right.

In the meantime, I'm having horrible pre-scan anxiety. I have my mri tomorrow morning to have the first really good peak at the tumor. As the days have approached, I've noticed myself more short of breath (duh...I'm also pregnant) and I've convinced myself that even thought we've seen x-rays of that bad boy just melting away...that tomorrow they will discover that it is still active...that the treatment has stopped working.

It's irrational. I'm sure things will be fine...they will probably tell me it's gone...and yet I'm so panicked that I've had trouble sleeping or thinking straight. I don't feel like I can allow myself to be vulnerable and so I've spent the day laughing and joking with dh, nursing staff, my mom etc...."It's going to be fine...things could be much worse"...the reality though is that I wish I could just fall into someone's arms and be comforted for a few minutes. I would be embarassed to cry...embarassed to be exposed as not being as strong as they all think that I am. I always hear how well I handle all of this stress and bad news..the truth though is that I'm just afraid to slow down...afraid to stop or be vulnerable or scared because I'm afraid if I do...then...I will lose this battle. I can cry about all of this when it is over...

[PrincessFiona]

March 14, 2006

The rollercoaster continues We did a biophysical profile today and the amniotic fluid was up to 9...still a little under where she wants it to be, but it's much improved. The power of bedrest, I guess!

The steroids did cause my sugars to go up quite a bit...above 240 and so now my endocrinologist gets the last laugh. She came in to see me and asked me how my sugars are at home.

"ummm, I...have been a bit complacent about measuring them"

"Sooo..complacent means...not 7 times a day but..what...5?"

"ummm...yes (averting her eyes) maybe 5..or..4..or something sort of like that"

"mmmhmmmm" (I hear her making a mental note that I haven't been checking my blood sugars) She was good natured about it all.

In any case...now I've got forced compliance and...insulin. yippee

The mri also went ok. It was hard for me w/o dh there because it is open at the back and he is usually able to talk to me from the head...that way I have the illusion that it is really an open mri even though it isn't. If I moved too much, I could feel the sides..and when I moved my finger once I could feel the top ... I had to work really hard to keep myself from freaking out. I am a bit claustrophobic.

The results were good, but not what I was hoping for. I guess, after 4 cycles, I had expected the tumor to be gone. It is still 2.7cm at it's widest. Granted, that is quite a bit smaller than the 9 and 10cm readings we had before...but its' still bigger than I want. They also couldn't tell if the cells are active or scar tissue...another important distinction. If I do end up with remaining scar tissue, I'm at a greater risk of recurrence...but if the thing doesn't go completely into remission before radiation I don't think that's a good thing either.

DH was elated...."you are going to be cured"...I'm less jubilant..maybe you'd call it cautious optimism? I won't feel ok until 5 years from now.

The rest of the tumor is also situated between both lungs and right near my heart..that may possibly explain the occasional shortness of breath/irritation/fulness I occasionally still feel? I don't know. I'm sure my oncologist would tell me it's all just 'anxiety'..but I don't think so. I had symptoms of this tumor before it was visible on the x-ray even, and I can't help but wonder if the close proximity to the organs coupled with an immune response to get rid of it doesn't cause some inflammation or something???

In any case, this was definitely a good news day unlike yesterday.



Kris

[PrincessFiona]

My internet connection was just too slow to update!

I'm finally home...and...still pregnant!

My amniotic fluid went up to 9.2...then back down to 6.89...but I was allowed to be discharged on modified 'bed rest'. Interestingly, modified bedrest was defined on this sheet as being allowed to get up for the bathroom and...to cook meals

I have to admit not really laying around much. The kids have been excited to have me home and it is very hard to lay down in the house with all of the activity around me...that and my dad and his wife are here. Even though they tell me to 'sit down', I'm foolishly afraid that they will think that I am lazy if I do. If anyone has any 'sit down' work they need done...please send it my way!

I've been warned to be prepared to be 'in and out' of the hospital until she's born and...that Monday may start a new hospital week because I have chemo at 9am. We'll see what happens.

In any case, we made it to 29 weeks on Friday....which...is fabulous! They estimated her weight at 3 pounds (u/sound) and she got an 8/8 on her biophysical profile. That is all good!

Oh...I spoke with the oncologist about my mri results. He told me that the response was 'excellent', that my prognosis was 'excellent', and that he'd be 'shocked' if I weren't cured. He also said that the location of the remaining tumor/scar tissue could mechanically cause irritation and a feeling of shortness of breath. He added that there will always be scar tissue there and this is why doing the radiatoin will be so important.

I was disappointed initially with the mri because of the remaining cells. We have a friend who was recently dx with a stage 4 large b cell lymphoma and he has only a teeny spot left after only 2 treatments of CHOP-R. Before tx, his entire PET scan lit up and he had it in his bone marrow. Now it is confined to a quarter-sized region in his abdomen. I didn't understand why his response was that way and after 4 treatments, mine wasn't. My doc explained that even though they are both large B cell lympohomas, they are 'different beasts' (his is in the lymph nodes and mine is in the mediastinum/extranodal)....and that our response to the treatment was 'equally good'.


happy day.

kris

[PrincessFiona]

March something....2006

Cycle #5 of 6 is finally behind me. I was admitted Monday night to observe baby and look for contractions...I was told that if I began having contractions they would not stop labor and would immediately deliver me. Fortunately, the cramping didn't progress and I was able to go home Tuesday afternoon.

Also, my amniotic fluid levels went up to normal. Apparently, the problem last week was that there wasn't a pocket that was 2cm by 2cm or something....I guess I didn't understand that....now the levels are 'normal'...though we're on watch and wait again because of the chemo on Monday.

I'm due for another ultrasound in an hour and...that of course makes me a little nervous.

At this point though, I feel like I've been put on 'orange alert' and 'red alert' so many times that it's like the homeland security alerts...meaningless. I'll just buy myself some duct tape and maybe some cans of tuna fish for under the bed and hope for the best

I feel much more optimistic for baby because we'ree 30 weeks on Friday..that is good news.

I've also gotten some really great emails from jlynnb's husband...who is a practicing neonatologist...and they have provided both Thomas and I with some relief. Everyone here has been so supportive and I'm so grateful for that!

My Dad and Rose came last week a couple of days early when I had to go into the hospital...they came into the house saying "we're going to take the kids with us for spring break" but....they left two days earlier than planned saying "we have some other obligations" That works for me...Thomas and I were worried about how we would tell them that the kids couldn't go....apparently, spending so much time with the kids took care of that for us! :>

I'm glad that they were able to come and help...but my house is a wreck...I'm so surprised that 3 adults (Thomas, my dad and rose) had such difficulty keeping things going. Also, the second that I got home I was sort of 'back in charge' despite supposed modified bedrest.

Tuesday morning it was just me getting the kids up and out the door again..despite Tylenol3 for a chemo migraine and some real exhaustion. This is really starting to make me tired....and...I always feel short of breat the week after treatment.

Kelly surprised me with a visit (and can I just say that I could have died of embarassment when she had to go upstairs and see how we 'really' live...I soooo thought that I was past feeling that way, but my instince today is to give the house a deep cleaning and then invite her back over Seriously...pig sty is about how I'd describe it! ). We had a nice talk and then went out to TGIF for lunch...when I got back, Aidan was napping. I sat down and worked on some cross stitch and then the little stinker woke up...he craweld up onto my back and then...he peeed all over me.

I went upstairs and used it as an excuse to get into the bathtub. :> I was so tired afterwards though, that I didn't even get dressed. I laid in the bed with a towel wrapped around me and put on HGTV. DH came in and said "when are you going to put all of the laundry away. Why are you laying in bed." ummmm...ok....I explained that I was tired and he said "You are always tired" and left the room.

I know that this is hard on him...I know it's wearing thin...but...it made me feel badly. I feel like I just need to suck it up and keep going...I feel like I'm failing my family now. That's hard for me. He apologized to me later, and said that he just 'forgot'...but...I just don't buy it. He has had to pull a lot more than just his own weight lately and I think he resents it...and maybe even me.

We're having the mil argument again too because he's decided that SHE is going to come when I have radiation. Radiation therapy is every day for an entire month. It won't take long each time...maybe an hour total? but...it is supposed to exhaust you, cause a bunch of icky side-effects and...well, who knows? I've decided not to read up on it because quite frankly...I don't...want to know. Ignorance is bliss and I think if I go into it without any bad expectations then I'm likely not to experience things in a negative way. At least that's my rationalization.

I told Thomas that HE will have to stay at home in the am with Aidan and Zoe and I'll take care of everything when I get home. He insists his mom is coming...to which I declared that I'll be getting treatment in Minneapolis and living with Kelly. I mean it!

kris

[PrincessFiona]

Alright...I'm bad...bad, bad, bad.

I have been really lax about taking my blood sugars as I've previously mentioned.

So I started back on the prednisone for 5 days on Tuesday after being discharged from the hospital again. I slept most of the afternoon/evening because of my headache etc and then Wed I realized that I couldn't find my glucose monitor. I think it got whisked away by nutrition in the hospital. It sometimes took them awhile to pick it up after I was done eating and I think I might have left it on my tray? I don't know.

I was afrad to tell DH because I thought he'd blow a gasket...but I finally fessed up yesterday and he got me a new one....without a single negative comment to me!

I went to bed at about 7.30pm (I'm so tired) and then woke up around 3.45am...ready for the day ...so I took my fasting glucose..it was...160. Ooops. I had some breakfast and an hour later, my sugar was 220

Double oops.

So now I have a dilemna...do I call my endocrinologist on a Saturday and let her know? I only have one day left of prednisone and then I'm sort of...errr...assuming the sugars will go back down?

If I call her, she will ask me what my glucose levels have been all week. What do I say? The dog ate my glucose monitor? Here, let me give myself the big fat F in my chart...do you have any red ink I can use? I was afraid my husband would be mad? I left it in the hosptial? eeek.

If I feed her some bogus numbers ....again....I'll be lying and ..well, I can't really do that now.

I could just not call her and hope for the best when I'm off of the prednisone again next week...and maybe it will work out...but if it doesn't then I look like a big fool...

And then...if the sugar levels go up next time with the prednisone, I'll really...really...really be in trouble.

Ahhh. the tangled webs we weave. It's only 5.10am now and I feel like waking up dh now just to get his thoughts...I think I'll suppress the urge. Remind me again why I was being such a pain-in-the-butt about this whole blood sugar thing at the beginning? Truly...I'm embarassed!

kris

ps...maybe I can blame Nellie for all of the yummy cookies!