Life In The Real World

[PrincessFiona]

December 19, 2005

"It's either an unusual presentation of something usual, or a usual presentation of something unusual" is how the conversation with my husband went this afternoon. Apparently, it really is unclear what the heck this is...which adds to the stress of the biopsy and ensuing oncology appointment. I hope it's an unusual presentation of something usual...and curable.

I've been up since 2am...and it's about 5am. I'm hoping that I'll be so tired that I'll just....not notice what's going on with the biopsy. I still don't understand why they don't routinely sedate people for procedures like this....a biopsy of the leg...I can understand not sedating someone...but the chest? Just the idea of this feels like torture to me. Hopefully it won't be as bad as I fear....

This all still seams so surreal.....I'm struggling to find any hope at all. My dh did 18 months of oncology before deciding on ID...and he used to tell me that "the young people die and the old people just get older and sicker"...now I can't get that out of my mind. I feel like the grim reeper is following me everywhere I go...and instead of imagining a future where I help counsel pateints facing this kind of a diagnosis, etc, I imagine my husband coming home alone....walking into our closet alone...moving on with life....I imagine how my children will respond to me not being here...

I don't know if this is a normal part of the grieving process for me or if it is a foreshadowing...and then I feel more frightened. They have a counseling group here for individuals going through this and I'm going to join.....

kris

[PrincessFiona]

December 23, 2005

The biopsy was unpleasant...though not completely miserable. They were able to numb up most of my chest..just between the ribs was a problem. I think the anticipation and stress was just overwhelming too...I cried during the last half of it..not because it was so awful...but because I just felt so awful.

The next afternoon, we saw the oncologist who had a tentative diagnosis of Large, Bulky B-Cell Lymphoma (mediastinal). Later mayo followed up with 'highly aggressive' and a bunch of other things that I don't understand.

I'm trying very hard not to google this or read too much...every time I do, I feel depressed.

I had to go in for a bone marrow biopsy on Wednesday (I think it was wednesday...actually, the days have all just blurred together). I was terrified...absolutely terrified. I took 2 percocets before I went and the doc used a massive dose of lidocaine...honestly...I felt almost nothing at all during the procedure. I was so relieved by the time it was nearly over that we were laughing and joking around. I practically lept from the bed I was so joyful when it was over. By the time I got home though, I was throwing up from the percocet.

Still, I hope to never go through it again..the anticipation is a killer. The bone marrow was clear.

Right now this has been given a Stage 1 diagnosis.
It is very large though and as a result I will need 6 cycles of CHOP-Rituxan followed by radiation.

In the meantime, the docs have met with perinatoligists from Mayo...the baby will probably do ok. The big concern is placental viability and fetal growth...so I'll be having weekly ultrasounds and be seeing my ob every 2 weeks.

I started taking prednisone on Thursday, but I feel no improvement (instant gratification gal that I am). I can't climb stairs, carry around my 2 year old, or bend over to pick something up without becoming short of breath or having difficulty catching my breath. It is terrifying...It is horrible to know that there is something there growing that I can't just remove or have removed. Sometimes I start to feel panicked and claustraphobic...like I need to run away from myself....

I can't sleep well at night because I'm afraid of something awful happening....I have to sleep sitting up on a pile of pillows because otherwise I just can't catch my breath...and it seems to have worsened this week. I don't know if it's because I've been diagnosed and I'm super-aware or if I'm really experiencing this.

I was supposed to being the rest of the chemo regimen on Monday, but that's been changed to Tuesday...and I just feel like I can't wait. I so desperately want to feel better...I so desperately want to be rid of this awful thing.

My husband goes from being hopeful (the doc told him I had an excellent chance of cure) to being devastated when he gets online and reads all kinds of articles etc. Tonight he came home from work depressed and sat alone in his office....and it made me feel more depressed.

I think the prednisone is making me feel depressed too. Only 2 days and I'm all puffy and I've gained 2 pounds...I'm taking 100mg a day, so that's a lot I guess.

I just feel exhausted and instead of feeling this joy over Christmas I feel....deflated.

None of my friends really call me anymore to just 'shoot the breeze'....I guess people don't know what to say, but I feel like not only has my life changed because of this horrible diagnosis and fear of not seeing my children grow up...now my friends don't know what to say to me.

Instead of feeling grateful for the community support I've received here through the schools, I'm feeling irritable....because I'm not good at accepting help. I am embarassed and don't feel worthy of all of the help that we have received...babysitting, food, etc....It is so great that everyone has pulled together for us and yet I feel embarassed and like I don't know how to pay people back. ...though I'm sure they are expecting nothing.

I feel like I have to be positive for my mom and brother (who have flown in from TX) and also for the kids....my daughter has been so depressed that I have really really worked at being positive for her. We even had an ultrasound today and she and I went and saw the baby....

I used to worry so much about the baby surviving...but now I have begun to realize that the baby may have a better long-term survival than...I will...and it's terrifying. I am terrified of dying...and I'm depressed at the idea that my children will grow up without me.

I don't know who to talk to....I talk to my husband but it just depresses him more....I know I need to get into some kind of counseling or something...right now, I'm just struggling to make it through a day...or up the stairs...counseling seems like way too much effort.

Christmas eve is tonight...I'm planning on being positive and hopeful....I know that it's important. I'm sure that I'll feel better after I've had the first round of chemo. Isn't that funny? I'm just so desperate to take ACTION....

kris

[PrincessFiona]

December 26, 2005

We had such a nice Christmas! Despite everything going on, it was a great day. The kids had a really nice morning. We did overdo it a little with the toys/gifts this year...and dh bought a dvd video player and we recorded it all...There was still snow on the ground and all of the excitment and enthusiasm that goes along with the rush of opening packages, squeals of delight and joyful voices ripping wrappers off of chocolate candies and candy canes. We were all on a sugar high for most of the day. Then there was the turkey, stuffing, gravy, sweet potatoes, cranberry sauce....yummmm.

I was struggling so much to breathe on the 23rd that I got very little sleep...I contemplated just going to the ER but I was afraid that I would end up admitted to the hospital and I would screw up Christmas for everyone.....The 24th was no better. My dear friend came up from the cities and I was so exhausted from not sleeping, so swollen from the prednisone and struggling so much to grab a good breath that I felt embarassed. The mass is sitting on the heart and around the vena cava and I think that is what is causing the problems.

When my friend left, I told my husband that I thought we'd just have to give up and go to the ER because I was becoming alarmed...but he checked me out and said I was still 'looking ok'...and we decided to wait.

I'm glad we did. I went to the Christmas eve service with my mom at 5 and it was hysterical. During the prayers I was just not really paying attention to what I said...and I uttered "and give us each day our daily trespassess...huh? oops". We laughed so hard silently to each other that we nearly had to leave the sanctuary. For communion at this church you dip your bread into the chalice of wine. We were so busy laughing at my trespasses that she missed that tidbit....and tried to grab the chalice from the pastor to have a drink. The look on the pastor's face...and my moms was...priceless. It was so funny that again....we were reduced to tearful fits of trying not to laugh out loud in the middle of the christmas service.

When we got home, my two older children were devastated that they didn't get to go to the christmas eve service....so...I arranged to take them to a larger church for the 11pm service and my husband *gasp* willingly went with us. This is a big deal, because even though he is a catholic (I'm lutheran) he hasn't been to church really since we got married (except for 1 or 2 christmas eve services where he was forced and then I gave up). We all sat together and he tried to follow along...and sang.....and he took communion for the first time in 20 years. [Eek!] Then he sat with me and held my hand while we sang the final songs....

I honestly don't know where I'm at with my faith..I've become a more cynical person as I aged and I'm not a regular church goer..and I have a lot of religious doubts...but towards the end of the service, I found I was breathing more easily...placebo? prednisone? God? I don't know. But..I slept so comfortably through the night and barely had to be up on a wedge at all. I woke up with my face looking like I'd gained 70 pounds overnight (day 4 of 100mg prednisone, I'm sure!) but I was breathing comfortably...and was able to do so all through Christmas.

Last evening I struggled a little around bedtime, but was able to fall asleep and breath comfortably through the night.

My face is still terribly swollen (I'm horribly embarassed...I don't think I'll be going out in public much but my breathing is definitely improved. There is really no worse feeling than not being able to draw in in a crisp, deep breath of fresh air...the panic that it causes is horrible.

I start the rest of the chemo regimen tomorrow...it was delayed because of scheduling reasons...and I don't feel really nervous about it. I just want to get started with it...I want to take action. I'm concerned about the baby, but I have come to terms with the fact that the baby may not survive. That's an awful thought, but we've also been given plenty of reason to believe that there is hope that he/she will make it until it is viable enough to be born early.

I bought myself a cross-stitch baby blanket kid with the 'now I lay me" prayer on it.....and will start it tomorrow for the baby when I start the chemo....then when the baby is born, it can stay in the NICU with the blanket.

Kris

[PrincessFiona]

December 28, 2005

Chemo Day 1....Finished. As with all parts of this process, the anticipation seemed worse than the actual 'therapy'. The treatment took from 8am-6pm. They started with the Rituxan...which took ages because they had to stop/restart whenever I began having an allergic response. For the interested, Rituxan specifically targets B Cells and marks them for destruction by macrophages (hopefully I'm getting the science right here...I'm too tired to check)..and it is made using mouse antibodies...which causes an allergic reaction. After than, the other drugs were given.

I think worrying about what the allergic reactions 'might' be was worse than the actual allergic resopnse of itching, etc.

After I left, I felt hugely bloated....I could barely catch my breath because my stomach had just blown up...it was really weird...fortunately, that has gone down today.

I was up much of the night drinking water and running to the bathroom because my mouth is so dry...I have to stay hydrated.

Other than some pesky flu-like symptoms/headache and tiredness, I feel ok. It could be worse and I'm just grateful to be started with the treatment....1 down...5 to go..plus radiation.

Today I go in for another ultrasound to check on baby as well. Hopefully, things will be going alright for baby too.

The weird irony here that I was thinking about yesterday is that I've got a touch of OCD...and one of my obsessions has been 'catching cancer'. Confession...when I get change through the drive-thru, I try very hard not to touch the person's hand giving the change...if I see someone with cancer...terrible confession...in the past I've held my breath just in case..though rationally, I know you can't 'catch cancer' that way. A few weeks ago I was up at the clinic for a peds appointment and Aidan (age 2) ran down by the cancer center....I couldn't help but feel it was a bad, bad omen....I hold my breath when I drive by graveyards and I don't read the obituaries.

I've lived with these symptoms long enough that I know to just let them...pass on through my mind.. but the irony here just is just weird.

The thing is, I KNEW something horrible was wrong...I really did. My dh thought I was being my hypochondriac self (not out of the realm of reality, either) and I actually sat and laughted with my internist while we were waiting for my x-ray to come back about how I probably needed prozac instead of an albuterol inhaler. Turns out...I didn't need either....

The inhaler didn't work for me anyway...and just a few weeks ago when I was complaining about it, my husband turned to me and said "what are you telling me? That you have a lymphoma or something? I mean...if it isn't working and you really ARE this sick then something awful is wrong".

We've replayed so many of these conversations/thoughts over the last few days.

But....I feel positive that we are on the right track...sorry for the ramble.

Kris

[PrincessFiona]

December 31, 2005

I decided to start this post out with a "stupid things that people say"/NOT HELPFUL section ....because for some reason, close family/friends that we tell about the diagnosis seem to be all to free with their horror stories/comments.

So...introducing my NOT HELPFULlist:

1. After relaying the news to a close family friend, she launched into the story of her brother who died 7 years ago from...a...lymphoma...of course. "Yes, it was terrible...he just had a small spot on his tonsil...they tried everything...it was just so aggressive...within 10 months, he was dead" [yikes] "At the end it went so fast that you could literally see the tumor progression...but I will spare you the details".

Thanks, hon...you could have spared me your whole damned story!

2. My uncle was diagnosed with an inoperable astrocytoma a year ago...and since then, they've gone through a lot. I regret that I've had little contact with her since then, but she is the kind of person that if you call her, you literally can be on the phone for up to 7 or 8 hours...you CANT get off of the phone with her...and she becomes a serial caller. Anyway, after hearing about the diagnosis, she called me to tell me about how 'horrible' chemotherapy is. "Bruce's skin fell off in places, he had such bad diarrhea that he couldn't go anywhere, he was so miserable that we thought the chemo would kill him."

Wow...and when I stopped taking her calls after that little refreshing bit of news, she promplty emailed my mother to let her know that it was obvious that I didn't want to talk to her, but that she would continue to "love me" anyway. Must people be so....neurotic?

3. During my first chemotherapy, I was offered Adavan by the nurse as a part of what they offer to all patients, I guess....I wasn't more nervous than normal....I politely refused reminding her that Adavan is a category D and that I didn't want to take any anti-nausea or anti-anxiety meds etc that were C or D if I could avoid it in any way.

"Hon, you realize the chemo drugs are like...category Z, right?" Gee, no..I didn't realize that. So...again, I just politely said that I still wanted to try and limit the amount of toxic substances since I'm trying to give the baby every possible chance.

At the end of the day, I'm surprised by the people here that I thought were my friends who aren't really...and by those who have crawled out of the woodwork that I barely know...to help in any way that they can.

A friend from my old neighborhood (for whom I've done numberous childcare and other favors through the last few years) called once when I wasn't here and told my mom for me to call her if I needed anything because she "didn't want to bother me"...I called once, but she didn't return my call.

None of dh's colleagues with whom we have had regular social contacts for the last several years have made an attempt to get in touch with me. It's so weird. We went out to dinner together, were walking buddies in the summer, etc...and now they are suddenly silent.

My 11 year old's first grade teacher has cooked me three meals, done my laundry and watched my children once [yikes] and called me yesterday to say that she and I will go out this week for coffee one day so that I won't be alone. So I guess I can forgive her for telling me about her daughter's husband who recently died of cancer. [Roll Eyes] Her kindness is just overwhelming to me though and I have trouble accepting it...because I don't know her very well...at the same time, I'm so grateful that it makes me want to cry.

Funny story...after she found out about my diagnosis from another teacher at the school, she called me and we went for coffee....where she promptly told me that if I weren't pregnant right now, she'd give me some of her marijuana to help me relax. [yikes] That sure explains a lot about my son's first grade year! [rotfl]

Other than my favorite stupid people stories...things are going ok. I have recovered from the chemo tiredness...now the kids are all just waiting for my hair to fall out. Every day they examine my head: "Mommy, I think there is less hair right here...and your scalp looks white!" They took a vote on wigs and decided that they want me to have a pink, purple, yellow and green wig....I threatened my 11 year old that I would be buying a multi-colored wig and then would be showing up to have lunch with him. He started screaming "NOOOOOO!".

My breathing is much easier now...I guess the tumor is shrinking. I developed a really annoying 'plural rub' that has come and gone since about 24 hours after the CHOP-Rituxan. I have no signs of Tumor lysis syndrome, which was initially a concern...just an annoying rub and a little pleural pain, which the doc says is "good news"...from the tumor dying and the irritiation on the tissues.

kris

[PrincessFiona]

January 3, 2006

So...I'm having my own little pity party today. It started a few days ago but I just seem to be plummeting into..the abyss. The dread and fear of not being cured from this thing have taken over my life. To top it off, I find that despite being stricken with what should be a life-altering illness, I'm still online too much. I even considered registering for the Spring semester...then dh reminded me that I was going through chemo and radiation and would be having a baby in the NICU soon....

oh...

Is this really happening to me? How could this happen? I feel so devastated...so sad...so...not postive..and everyone knows that positive people have better outcomes...so I'm trying to force the positivity...laugh a little more...when all I want to do is sit down and sob until there's nothing left.

My daughter was singing 'the annoying song' tonight at the dinner table and we were all laughing at it..."I can't wait to teach YOUR children that song" I said...and it hit me again...please God...please let me be there to see my daughter graduate highschool...please let me be there when she walks down the aisle..and has her first child. Do not take this from me...do not take this from her.

My 6 year old refuses to go to school...he cries, screams, shrieks, rips his clothes off and hides behind furniture. It started before 'the illness' when he choked on something at school...but truthfully, since this came about, he has gotten much worse. He has even spent a morning crying and sobbing in the nurses office begging to go home to his mommy. We had a terrible fight this morning and I behaved absolutely horribly...because he refused to go to school, screamed, cried and had a fit. By the time he left for school, he, my daughter and myself were broken down in sobs. And all I could think of was that if I die....this is what they will remember of me.

I went to his school at 'work time' and stayed for recess and lunch. He was beaming the entire time. He told me he'll go to school every day if I just come for recess and lunch...because he was "so happy that I came there to be with him because he misses me so much".

How can I leave him?

My oldest child came home from school and then hugged me "Mom, it feels like I haven't hugged you in ages"..he's so grown up...will I get to see him grow into a man?

My 2 year old clings to me...will only play blocks with me, will only let me read to him and cut his hot dogs.....he cries hysterically if I leave to go to the store.....what if there is a day that mommy doesn't come back?

It is unbearable to me. It is impossible to be positive...it is impossible for me to focus on what my oncologist said was an 80% plus cure rate sometimes. He DID say that...he DID....but I read online and I find rates as low as 38% or 58%...and then I break down into hysterics.

My husband tells me that it 'could be worse'. I know it could...I do. He is treating a woman my age who was diagnosed the same day that I was with a horribly aggressive leukemia...she is critically ill and her prognosis is poor. She has 3 small children...He also is currently treating a 42 year old father of 2 little boys with renal cell carcinoma that metastasized to the spine. It's bad...it's all bad. It's horrible.

I mourn for these people and their families. It is awful..it his horribly unfair..and then I feel guilty that I have a much better chance at surviving and even being cured.....

But I feel so tortured...I had an awful itch during the night a couple of days ago and I dreamt the cancer had metastasized. I woke up several times that night...wishing I could change my dream....wishing this all was just one bad nightmare.

I have pleuritic pain now as well as some shoulder pain. My dh says it's all from inflammation from the tumor being attacked....but I keep wondering if I'm getting lung infiltrates or things are getting worse...even though I'm breathing better. Every twinge makes me worry...anytime I can't catch my breath I want to run....away....and all I can do is wait. Wait and see if my x-ray in 2 weeks shows that the tumor has shrunk..wait to see if the treatment is working...wait for more chemotherapy...wait.

I'm just not a strong person, I guess.

And who do I talk to? I feel silly posting about such personal things now ...I can't share my feelings with most of the real people around me..except for my dh who is as overwhelmed and sad as I am...I feel like I'm now the accident that people drive by slowly to have a look at...but then gladly accelerate past.

I don't know how to find a therapist...I read through the entire phone book yesterday, but what are you supposed to do? Pick someone who has a nice...name?

I know tomorrow will be a better day...I know that I felt badly yesterday evening and that today was better...I'll feel better again....I just have to find a way to get my emotions back under control..

kris

[PrincessFiona]

January 5, 2005

I feel better today...and almost embarassed by my emotional outburst the other day. It is hard to feel so out-of-control. I'm used to being able to control a lot about my life and I'm not good at dealing with uncertainty. I know that there are really no guarantees for any of us that tomorrow will come...but this illness puts that into an all new light.

Cancer is something that happens to 'other people'...until a few weeks ago, if I had read a story like mine I would have been able to distance myself from it believing somehow that I am immune to something like this. Sure, you read about things like this in Ladies Home Journal and Good Housekeeping...but that's just so far removed from MY reality. After all, I have 4 children, I'm 35, I'm pregnant...what is the statistical chance of something like THAT happening. I've said things like that many times to myself simply because of my fear of becoming ill.

So yesterday, I decided to simply believe that things will be ok. I am feeling better, breathing better, I am young and able to tolerate the chemotherapy. Things will be ok. I went and bought some preemie clothes for the baby because I want to be positive that there WILL be a baby there to fill them soon. Instead of being anxious and afraid, I've decided to take control in the only way that I know how.

I was going to buy my daughter a wedding present to be able to give to her some day ... with the belief that I would be here to give it to her...but...that sort of freaked me out too much. It led me down the "maybe I should make a hope chest for each of my children with a card/gift for every event/birthday/holiday just in case" and that really wasn't the 'strength' that I was going for. I guess I need to take it one thing at a time!

I'm sure that I'll have more down days, but today is a good day.


kris

[PrincessFiona]

January 12, 2006

It feels like an eternity since I've updated my blog. So much has happened this past week. In keeping with my 'take control' of my life attitude, I made an appointment to go in and talk with my internist. One of the things that had really been bothering me was how my diagnosis came to be passed on to me.

I have a friendly relationship with my doctor...we're on a first name basis and I am usually scheduled to come in and see her at the end of the day because we tend to be...chatty. I enjoy her very much and I honestly...really care about her as a person. She has given me the impression that she feels the same way about me. Ahhh, how the boundaries can be blurred as a doctor's wife....

Once the kids got back to school, my mom left and my husband went back to work part-time, I began ruminating about the fact that she had been dishonest with me and that she had called me sounding panicked and upset to tell me about the mass...It was really a 2 minute phone call if that. I was mad that there was no follow-up. I started to feel betrayed.

When she came into the exam room she hugged me and then I laughed and told her we needed to 'talk'....I pretty much said "1. you lied to me, 2. you called me on the phone and told me I had a mass and you were upset and 3. you abandoned me after that". She talked about her feelings..how shocked she had been when she saw my x-ray and how she had wanted to believe that it was something benign related to pregnancy...and then...she started crying...and she told me, through tears, how much she cared about me and that she had cried that night and cried before she called me...and cried when she showed the x-ray to my husband down in the radiology department. She told me that she felt so hopeful for me now but that she had been so devastated initially. She told my husband "I really love your wife" and he had replied "me too"...and they had shared a moment, I guess.

I was really touched by how much she cared and I am so glad that I went in and talked with her about my feelings and listened to her point-of-view. I also felt so much happier and relieved when I left.

The rest of my week has been up and down. I have been tired...and...my hair started falling out. At first, it was not..from a place that I actually expected to lose hair. Though I coped with it by entertaining the thought of buying a bright purple shag pubic wig that I found online...I am planning on wearing it when I go in for my c-section. I can't wait to see the look on my OB's face.

The hair on my head started shedding a day later...and it was just a couple of hairs here and there. I have such thick hair that I started to believe that it was so 'strong' that I would keep it. The following day, I could run my fingers through my hair and pull out about 30 hairs by giving a gentle tug...it didn't hurt and it was really odd....Today, I got into the shower and when I went to shampoo my hair...half of my head pretty much landed on the drain. I couldn't believe it...Every time I put my hands through my hair, huge amounts came out. It was almost alarming because I couldn't seem to get the hair out of my fingers. I finally put some conditioner on to try and 'smooth' the rest...rinsed it carefully and got out. With a wet head, you can see through to my scalp in many places...and there are lots of bald spots. Once it dried, it fluffed up and looked much better...you wouldn't really notice unless you knew...I don't think...but...my husband thinks that the rest will be gone tomorrow.

It's a good thing I visited the 'wig lady' on Monday...Of course, I was so embarassed being there and so worried about inconveniencing her that I took a red-headed wig (to fulfill my hubby's fantasies) and didn't let her cut it or anything. "No, it's fine the way it is"...now I'm wishing that I had done something. I feel very self-conscious wearing it, so I doubt I will...excpet for limited times when hubby wants to see it [Roll Eyes]

I'll admit that I may not be up for it then either....I suddenly feel even more unattractive...and the reality of this illness is looming a little larger.

Today I also got bawled out by the Recess Attendant at my first grader's school. Since all of this started, he has become more and more reluctant to go to school. It started with a choking episode, but has blossomed into much more. We were having mornings of screaming, crying, tearing off clothes and hiding behind furniture. His teacher even drove out here and picked him up one morning. He kept telling me his day was too long and he missed me too much, so to get things going more smoothly, I started agreeing to go to recess and lunch with him every day. This has helped enormously. There is one attendant though who scowls when she sees me coming with my 2 year old. Today, when my 2 year old was playing on the equipment (with my almost 7 year old behind him and me standing on the ground in front of him) she came up and bawled me out telling me that this was unsafe and did the 'principal know' that I was coming every day with my 2 year old? I wanted to just scream "Do I LOOK like I want to be standing out here in 25 degree weather with a 2 year old and my first grader? Do you know he won't go to school because he's afraid something horrible will happen to his mom?" I just pretty much said nothing. Apparently, one of the other attendants overheard and went to my son's teacher about it...but it made me so mad!

I have had a lot of postive days where I've managed to get things done in the house, but it is very hard to stay at home and keep busy. I realize that my career issue is an integral part of who I am. I began searching the U of MN med school website again this week...and started that obsessive 'what do I need to do to apply' thinking. Does it ever stop????? DH basically said "if you beat this, you can do whatever you want, Kris"...and that scared me....if? IF? I, personally, refuse to consider any other alternative.

Which makes tomorrow loom even larger in my mind...I go in for bloodwork and a chest x-ray to see if this whole thing has started to 'work'...I feel anxious...I'm trying to throw a positive spin on it all...I notice a difference...I know it's helping...but until I actually hear the doctor say it, I'll be nervous.

kris

[PrincessFiona]

January 18, 2006

My Dr's appointment went really well. The treatment is working and the radiologist noted a 'striking improvement' in my x-ray. The tumor had shrunk by more than 50% after the 1st treatment.

In the meantime, I've had my second treatment and am feeling a bit tired...but otherwise not too bad...AND I went to have my level II ultrasound done. The baby is looking healthy and we've been given more encouragement that with some luck we might make it to 34 weeks before delivery. That would be very good news for this little peanut.

kris

[PrincessFiona]

January 23, 2006

I haven't really given a good update in awhile....things just have gotten away from me. Chemo and dr's appts. aside, I've also been busy with the kids. I feel like I hardly get a chance to be online anymore. I'm still having to go to school daily with my 6 year old for both recess and lunch..then there is geography extension, academic triathalon, band, girl scouts, boy scouts, tiger scouts...etc. This weekend we finally ended our week-long busy schedule with the pinewood derby. I'm so glad to have it out of the way....there was no school today and I was so grateful for the extra chance to just sleep in!

Life for me has been a bit of an emotional roller coaster lately. Last night, for example, dh and I pulled out our old American Wedding and American Pie II DVD's (juvenile, I know!) and sat down and had a good laugh. We really just laughed like we hadn't in months....and in the middle of it all, I was just struck by this awful feeling of doom. There I was laughing and ...boom...suddenly, tears just started rolling down my face. It was startling to me to go from laughing one minute to feeling so profoundly sad the next. The odd thing is that I didn't even know what I was feeling sad about...at least not at a conscious level.

I feel so ridiculously melodramatic lately....when I was driving around today to drop my daughter off where she needed to go and was looking at the snow I wondered to myself "is this the winter of my life?...did I skip the summer and the fall?" It's all so foolish....chances are, this time next year, this will all be but a memory and I won't even be able to believe that it 'really' happened. Why, then, do I insist on thinking these kinds of thoughts? Most of the time, I feel upbeat...almost in denial...and then I have these momentary thoughts that I need to finish the photo albums etc.

My husband keeps riding the rollercoaster next to me. Today, he called me because he has a 35 year old patient that had a hodgkins lymphoma at 18 that was cured. Six years later, the same patient developed Burkitt's lymphoma ... and was cured...but because of all of the radiation, he now needs a lung transplant. Then there was the 27 year old patient he was consulted on with a brain lesion...the neurologist thought it might be infectious..dh called me "it's malignant..it looks like she has brain mets....I can't do this job anymore".

He says he can't separate himself now from his patients...what used to be a patient with problem x is now a person with a family, or children, or a life not finished being lived...and he can't handle it. He also keeps getting online and reading all kinds of studies, etc...recently, he found something that suggested that mediastinal lymphoma is diff. than the standard b-cell lymphoma and has a poor outcome because of some type of genetic who-knows-what because it rises from the thymus instead of the lymph nodes, etc. It gave a 30% cure rate or something ridiculous...and he was beside-himself. After telling me to STAY OFFLINE, he can't keep himself from doing it. This was one blasted little study at one little university and there is a ton of data out there to point towards what the oncologist says is an 80% cure rate....but I guess he is afraid..and...I guess so am I.

I'm also struggling to deal with the whole hair loss issue. In the grand scheme of things, it doesn't seem like such a big deal..except that I feel even less attractive than I did before...and it is so..obvious to everyone around me now that there is something 'wrong'. DH was stopped in the hallway today by a nephrologist whose son had been at the pinewood derby "is your wife sick? Can I help?"

I went to the boy scout pack meeting on Thursday night and it was as if all eyes kept peeking at me....I knew that people were taking an extra look to see if I had just..tied back my hair in a bandana or I had really lost my hair...sadly, I've done the same thing. I never did it to be mean or to stare and I always tried to look without the person noticing [Roll Eyes] (great big DUH, now!). I think it is natural curiosity....and it is also human nature to see something like that and then feel badly and have questions...The scout families from our dens avoided me at first, but they were doing that 'circling closer to the table' each time they passed by bit....then finally one mom jumped in and they all followed. I felt so akward and uncomfortable and I realized that I had tears in my eyes even though I didn't feel like I was sad..I was upbeat, postiive "this is just a bump in the road, so many good things have come from it" blah, blah, blah...I assured everyone that I would be cured this time next year and then changed the topic of conversation, but I just wished in a way that everyone had ignored me...of course, if they had, I would have been ticked off about that, I'm sure. This is just an akward thing.

To add to the chaos...I have jumped full speed back into the "what should I do with my life" question. Apparently, I don't have enough issues going on right now to keep me busy Didn't I say at some point I would never contemplate career again? At first, I thought that I must be the only person going through this type of experience to not have an 'aha' moment...to find a greater understanding or purpose for their life. Instead, I was feeling selfish and guilty because my thoughts had turned to myself. Now, I realize that is part of my aha experience...I have been struggling with the issue of balancing family/career for years now and I simply do feel the need to go back to school at some point. I want to focus on my family right now, but I also want a clear plan of what I will do in the future when my littlest is getting off to school.

I have decided that I will go and get a graduate degree in Psychology in a few years. I would like to work in a hospital to help patients and their families cope with devastating diagnoses of all types.

More than anything, right now I want to establish better family routines and focus on making things here at home the way that I want them to be.
I want us to go back to game nights, movie nights and the things that we have sort of fallen out of doing. Amanda and I are going to scrapbook together this weekend....something we've never done.

kris

[PrincessFiona]

There's nothing like adding some sort of yucky virus to the mix.....I have been visiting at Alex's school every day and somehow managed to pick up a sore throat/headache virus that has been plaguing me for 3 days now. Yuck!

I had my oncology appt. yesterday and the doc told me that he would be "shocked" if I weren't cured with the treatment I'm receiving. I asked him what accounted for the 20% that aren't cured and he basically said "bad luck". hmmmm...That isn't terribly encouraging. I was hoping he'd say something about age or other medical problems or something. In any case, I'm still feeling very positive about it all.

And...on an interesting sidenote (don't know whether it's good or bad), he and his buddy from Mayo want to write me up as a case report. Apparently, mediastinal lymphoma makes up only 1% of all lymphomas or something..and being pg with mediastinal lymphoma is even rarer....there is little data on Rituxan (chemotherapy agent) in pregnancy, so they want to wait for the pregnancy to be over and report on the overall outcome. On the one hand I think "how neat!"...on the other I think "holy crap!"

Everything else in our lives has pretty much turned back to normal. I'm sort of relieved to have the same arguments and issues again. Of course, the flipside of that is that I'm also realizing that I want a lot of things about our lives to changes....I'm beginning to see things in a whole new light.

Kris

[PrincessFiona]

February 3rd, 2006

I felt so upbeat after my appointment on Wednesday, and then for some reason yesterday, I just crashed. I know I shouldn't get online and read about bad outcomes, but I did....and then I started feeling a real sense of dread and hopelessness.

The hardest part about going through all of this is the 'what if'. Most of the time, I can live in a state of denial, really. I keep myself busy with the house and the kids and try and keep things as normal as possible...but there are these moments where I get a glimpse of the potential seriousness of this illness.

I keep falling back on the 'bad luck' thing. I don't tend to be very lucky...I really thought that he would say that they weren't cured because of their age or inability to tolerate chemo or something that I could point to and say "that's not me"...but bad luck?

I have tried to remind myself that my life has had plenty of 'good luck' in it...even the early diagnosis is 'good luck'..the good response so far is 'good luck'...the fact that I was in the second trimester 'good luck'....but the overwhelming sense that I am struggling to push from my mind is that getting something like this in the first place is kind of...bad luck...and getting it while pregnant. Hmmm...really bad luck.

I still struggle with episodes of shortness of breath ... and the doctor tried to assure me that it couldn't be the lymphoma. "The lymphoma is shrinking, it is not lymphma related"....BUT...I had this problem when my chest x-ray was NORMAL...when the tumor was just beginning to grow. No ammount of reassurance of the neurotic nature of my symptoms will convince me now that my shortness of breath is anxiety. Last time we thought it was psychological we discovered the lymphoma.

I have started to realize that this is how life might be for a long time for me...with me wondering if the 'tingling in my toes' or the shortness of breath or...whatever the 'symptom' is...is a symptom of something larger. ..and it feels really frightening. I am going to have to learn how to adjust to that so that it doesn't drive me nuts. Last night, I laid in bed and just wanted to run away from myself....if I had been able to physically get up and run away from my body and my worries, I would have. I felt...claustrophobic.

I understand too that this is a normal part of all of this....it's 'normal'...it's just a bad feeling to have.

I guess the good news is that I really am starting to find my center...if that makes sense. Nothing really bothers me anymore. When I went for my u/sound on Wed., I wasn't in the computer. The intake people were beside themselves with upset and made a huge deal out of it...they ended up with 3 people hovering over the computer and I just finally said "in the grand scheme of things, this is no big deal. I'm happy to come back another time guys".....and really...it isn't a big deal.

A friend of mine was late for lunch today because she went to a different restaurant. Truly, stuff like that isn't even on my radar anymore! If she had gotten into an accident, it would have been on my radar...but...late for lunch? You have to be kidding me. Why sweat the small stuff?

I also feel myself slowly being able to let go of some of the baggage I've been schlepping along with me for years. It's not worth it...

Thomas and I were talking about how this wasn't supposed to happen now...we're supposed to be experiencing the 'light at the end of the tunnel', not hitting the train head on....but really....as much as this has been a 'bad' thing, it has been a good thing too....It has brought me closer to my family, I'm starting to really feel more grounded than I ever have, and our household is happier......

kris

[PrincessFiona]

February 9, 2006

I haven't had much time at all this week to be online. I had my third chemo cycle on Monday and it really hit me this time....I have been so exhausted. To top it off, I had some contractions Monday evening followed by cramping, and ended up on the OB floor for a few hours to be monitored. Fortunately, there was no evidence of pre-term labor and I was sent home. My OB scheduled me for a transvaginal ultrasound though to look at the cervix. I had that done yesterday...

and...as a lucky little sidenote, can I just say that every single time I've gone in for an ultrasound (7 times now) I have had one of the female techs....of course, yesterday, because I was having a transvaginal u/sound it had to be the lone male tech . It was such an akward thing. For those of you who haven't had the pleasure, you basically have to insert the probe yourself in front of the tech and then they...take it from there. (sorry to all of the guys reading!). So..when he asked me to insert the probe, I couldn't help myself:

"Are you taking me out for dinner and a movie afterwards," I joked. He turned about 3 shades of purple but laughed... Thomas wasn't pleased that I made the joke, but the tech told my OB later that he thought I was funny...so...I guess it's all ok.

Anyway...back to topic....the cervix is in good shape, but unfortunately, they discovered regions of my uterus that are 1 mm (millimeter) thick. Because of my history of a hemmorage with Alex and the fact that...well...I'm only 23 weeks 6 days today (tomorrow 24..yeah!) ... this is something that will have to be closely monitored, may require extended hospitalization and will mean an even earlier birthdate for Zoe.

My OB is now talking about a 28-30 week delivery instead of a 34 week delivery....we're doing the steroid injections in 2 weeks now to mature the lungs instead of waiting longer...we had hoped to be able to stretch this out a little further.

To add to the whole...package...I also have ketones (sugar) in my urine. My blood test today did not show diabetes, but I have frequent urination (as in..I went 3 times in 20 minutes wiating for the ob) and...well..I have the sugar in my urine.

Now, they are sending me to endocrine because they feel that the high dose prednisone is causing diabetes...and they feel that further bloodwork may show diabetes...or just time...will kick it in to high gear because of the predisone. My OB suggested that I also may need to be an inpatient now to get the steroid injections for baby because of 'sugar' issues.

AND..lucky me...I've gained 6 pounds in 1 WEEK. I had to see the oncologist's nurse practitioner today for pleural pain and he suggested that it was from the prednisone. "Let's look at your feet and legs..they are probably swollen because of water retention". We looked..and they are perfectly normal. He said "oh..you don't really have much retention".....I said "No...it's my adipose tissue that seems to be retaining things....and I've decided that I'm running out to McDonalds for a Big Mac and a super size fries because quite frankly, if I'm going to be gaining this kind of weight, I want it to taste good"

Anyway...though it sounds like things may be going lousy...I'm really doing ok. It certainly hasn't been an easy couple of days, but I feel like things are going to be OK....this is just a 'big bump' as my daughter would say.

Alex is doing much better about going to school. We haven't had a tantrum in two weeks! He even has tolerated me cutting back recess and going only for lunch.

I have a lot on my mind to say right now...to the many individuals here who have been emailing me and private message me...and to the group as a whole....I just feel so overwhelmed with emotion at the support and help you all have given me that everytime I try and express my thoughts, I find myself crying.

You all mean the world to me, and I am so thankful for your support...for your friendship....and for everything you have done. I will find a way to put it into words and to thank you all the way that I feel that you deserve to be thanked. I'm sorry that I haven't done it sooner....but I want you to know that I think of your generosity each day and I am not ignoring it...I just am feeling too overwhelmed right now to find the right words.

Kris

[PrincessFiona]

The yo-yo effect...

February 13th, 2006

Alex had his 7th birthday party on Saturday and it was such a blast. We had it hosted at a local gymnastics club. Seven of the boys from his school showed up and they literally bounced, jumped and tumbled for nearly 2 hours straight. Every picture of Alex that I have is with a huge smile on his face...from ear to ear. I think one of the nicest parts of the day though was watching Andrew and Aidan. Because Aidan is only 2, I didn't think he would be allowed to go out in the big open gym and participate in the party. Andrew (11) took him by the hand and basically led him through the entire party! They bounced together on the mini-tramps, did the mazes together and Andrew even went into the ball pit with him so that he could play in there. Aidan was so happy and he jsut trusted Andrew completely. He let Andrew catch him when he jumped off of an obstacle and jumped right into the foam pit with him without even hesitating. Andrew looked so proud to be taking care of his little brother. Amanda pitched in too...It was just nice to see the kids all sticking together and taking care of each other!

Thomas and I pretty much got to kick back and let the birthday party person do all of the work....leading the kids, cutting the cake, writing down who gave what for the birthday gifts. We just sat and watched and took pictures. It was definitely well worth the money! I don't think I'll ever host another party in our home again! :>

I'm kind of tired from what I call the 'yo-yo effect' lately...because I quite frankly feel like a yo-yo at the end of a string with all of the conflicting messages/medical news that I've gotten over the past week or so. I actually am feeling a little irritated by it all.

Since being told about the 1mm thick area around my c-section scar last week, I've heard 1. that this is very dangerous 2. that this isn't as uncommon and maybe isn't so dangerous 3. I might need bedrest 4. I shouldn't lift Aidan, do laundry, etc, 4. I might need to be monitored as un inpatient, 5. "I don't know" etc. As a result, I started searching online for information about uterine dehiscence etc and found as many conflicting reports there as I have heard 'live'. It seems like there are as many opinions as there are doctors giving them. At this point I wish that nothing had been said until I can see the perinatologist on Wednesday. All I want to know now is the bottom line: What are the real risks, and what do I need to do...and that's it. I'm tired of the drama.

I'm also a little irritated that I'm seeing a nurse educator this week and a nutritionist before even getting in to see the endocrinologist about the whole 'is she developing diabetes' thing. Though I had sugar in my urine, my bloodwork looked fine. Why on earth aren't I being given a fasting glucose test or something BEFORE making all of these extra and potentially unnecessary appointments? I thought I'm not supposed to be running out and about so much?

Of course, I appreciate the fact that people just want to help and are concerned and I am not complaining...I'm just feeling a little annoyed. At the end of the day, I really am beginning to wonder if there isn't a little too much caution going on...and things are really fine...

Other than my irritation with 'the system' and the whole 'not knowing' thing I feel in good spirits! I wore my wig to Alex's school today for the first time and I had the funniest experience:

I wore a headband with it to give it a style...and the headband popped off of my head somehow This caused the wig to twist and become lopsided on my head so I was desperately sitting there trying to straighten it and get the headband to get back on without a mirror, etc. The little girls sitting near us start to give me wide-eyed smiles....and finally the little boy sitting right next to me said "cool, can you take it off so I can see your bald head?" I didn't take it off, but I did lift it up so that he could have a peek...and he acted like it was the highlight of his day! I had a good chuckle over it after I left...though admittedly I was feeling sheepish until I got out the door. I didn't really care about what the kids thought...they are all just curious and basically kind...it was the grown-up lunchroom attendants I felt self-conscious around! Basically though...they are all just kind people too.

I'm trying to get geared back up to start working on the german with the kids and I've been wading through all of the workbooks and activities that I have collected over the last year. It's embarassing to me that I've collected so many 'things' to 'teach' them with and have done so little teaching. Truthfully, I just don't know where/how to start....so I'm trying to come up with a plan for that.

My dad and Rose left on Friday and things have been pretty boring around here since then. No more politics to discuss :> Actually, we had a really nice visit. It's been two years since my dad and I have seen each other and I think part of it is due to our many political and ideological differences. In contrast to previous visits, he was very positive about our lives and our children. He seems to really have mellowed. It was really enjoyable to be around him. He praised our children and told me repeatedly what 'good kids' he thought that they were. He gushed on and on about Aidan and has demanded to talk to any of the kids within earshot when he has called since arriving home.

I think that the illness has something to do with it...perhaps we are both realizing how petty it is to hang on to things from the past that can't be changed...and I saw for the first time in a long time how deeply he really does care for me and that...meant a lot. He cried after our trip to the ER/Ob-Gyn because he just can't come to terms with a lot of what is going on....and he has vowed to be here in a moments notice for any reason. "If you need me for any reason at all, I will get on the next flight and be there".

This is one of the silver linings of this whole lymphoma experience....Things just don't bother me anymore. I realize now that I really ruminated on a lot of unimportant stuff before and let myself get excited/angry/depressed about things that now wouldn't even be a blip on the radar screen for me. (I know I've said this before...please forgive the redundance!). I just realize that in the past, I've been a much more negative person that I was willing to admit or maybe...I just couldn't see it. I feel thankful now so many things in my life: a beautiful snow fall, the cat chewing on the few remaining hairs left on my head , bubble baths and the sound of my kids...fighting...yup...it still irritates me and even makes me mad at times...but I am glad to be here to listen to it!

Kris

[PrincessFiona]

February 20, 2006

This morning while I was getting dressed, Alex (age 7) came into my room and said "Mommy, if you weren't here, I'd scream at the top of my lungs." I turned around to face him and he added "if you died, I would kill myself so that I can be with you..."

I didn't know what to say. I was so caught off guard that I just said nothing.

I'm not dying...I'm not going to die...The reality is that Lymphoma has a good prognosis and I will probably be cured...but it just occurred to me in one horrible, overwhelming moment that for my children it would be so awful. This is a thought that I have pushed aside over the last few months.

I have felt so sad all day today.

kris