Friday, July 06, 2007

This is a different version of the same post, below. This one I wrote to the YSC boards. Writing as therapy, I suppose. Maybe by writing it I can write it out of my system.

I just have to rant.

I had Herceptin today. My onc ran into me and said, "I knew you'd be in and I wanted to discuss something with you." (uh-oh) She said, "It's really probably nothing but there was a 2.2cm spot on your chest on your last (6/14) MRI, and you need an X-ray to confirm that it's nothing."


She repeated all the things that it probably was (probably not mets), and she's so fabulous and wonderful and thorough, and reassuring, but the thing is, nothing can reassure me any more. The statistics are almost meaningless to me. I mean, I've heard "it's probably nothing" before, and I got breast cancer (and double mastectomies, chemo, etc.). "Probably" doesn't mean a damn thing to me any more when it comes to this beast.

So then I sat through Herceptin, x-ray paperwork in my hand, telling myself to stop having a fit and to calm down. Of course, that didn't work.

And it was nothing. The tech said, "Don't bug your doc until Monday at earliest" but, not being overly compliant with such things and being utterly unwilling to have another ruined weekend, I marched straight to my doc's office and asked if she could pull up the results (thank God for computers with instant information). She viewed the x-rays, and declared that I "have the loveliest lungs [she's] ever seen." Nothing to worry about.

But now I'm exhausted, and madder than hell.I have fought so hard to put this behind me. I wore a sassy cleavage-revealing dress to Herceptin today, proving to myself and the world that I Do Not Look Like a Cancer Patient. I wanted to show everyone in the treatment center that they, too, could be healthy and look great again. I wanted to prove to myself that I did not fit in at the chemo ward. I wanted to look like -and feel like- the antithesis of a cancer patient.

But the thing that makes me mad, furious, boiling, is that there is not a damn thing that I can do on the inside to prevent the fear from boiling over again. The cancer is in charge, not me, and a pretty, hip dress and lip gloss can fool the world, but if cancer wants to come back, it will. Simple as that. I can dress to impress (to impress myself, mostly) and I can run and mother my daughter and volunteer and fundraise and speak for the cause and it doesn't make a damn bit of difference. I did a ton of treatment, and that may not make a difference either.Two years out, and cancer still knows how to grab me by the neck and shove me against the wall, just for fun, just to mess with me. The fact that cancer walked away without leaving a mark this time doesn't placate me....I'm just so damn tired of being messed with. And I'm tired to realize that I just have to accept this behaviour, to live with the fear when it arises, and to acknowledge that it's out of my hands.

Cancer is a bully and I can't report him to the principal to get him expelled. Instead, I slink along the hallways, furtively glancing left and right to see if he's there, and with every scan or test I feel him throw me into the lockers and frisk me for my lunch money. The fact that he chuckles nastily and then walks away without leaving a bruise is of little consolation; I know that next time I might get beaten senseless.(And I have no idea where that analogy came from. I was never bullied....!)

So I'm venting, ranting, raging at the unfairness of it all. Two years out and I'm doing everything right and I'm cancer free and god-damn-it I want to be past all of this! I want to be invincible, and you'd think it wouldn't surprise me any more to remember how mortal I am, but each reminder hurts just as much as the one before.Damnit.

(And for the girls out there who are newer at this than I, I will add just one little tiny PollyAnna note at the bottom. Most days are much, much, much better than this. Sometimes I do forget about the bully....and that's perhaps why I'm so mad about him today. I thought he was gone for good, or at least for a few more months, and he surprised me. I don't like that kind of surprise. But most days are pretty darn good, not like what I'm describing here. Today was just lousy.)

Thanks for letting me rage at it all. I thought if anyone understood, it would be you ladies.

My nerves are frazzled.

To open, everything is fine, so I'm not trying to freak anyone out by this post.

But I'm completely frazzled.

After the long week plus of Tessa's illness, I'm just ready to be relaxed and stop worrying. I arranged childcare for Tessa this morning, and then headed to my Herceptin appointment.

First thing at my appointment, I ran into my oncologist, who said, "I need to talk to you. It's probably nothing, but the MRI showed a 2.2cm spot on your lung and we need to check it out; since you're here I'd like you to get an X-ray today after your Herceptin appointment."

Spot on my lung? This falls into the category of Very, Very Bad Things and scared me to death. Sure, she said it was probably nothing, but I've been told "it's probably nothing before" and then I got breast cancer and all that came with it. "It's probably nothing" is only very slightly reassuring, but not nearly enough to stop my stomach from somersaulting. Breast cancer often metastasizes to the lungs (as well as bone, liver, and brain) and so this is exactly the kind of news I'm frightened of getting.

So I went to my Herceptin appointment and tried to will myself to stay calm. Then, I went to the radiology department, stripped into one of those horrible blue backless gowns, and got my chest X-rayed, front and side. After the appointment, I asked the tech (who is forbidden from interpreting my results) how soon my doctor would have the results, and she said, "Well, I've already got them entered into the computer but I wouldn't bug your doc until Monday at the earliest." I smiled and thanked her, then ignored that advice completely (there was NO way I was going to sit on pins and needles wondering if the cancer had returned, worse than ever) and marched straight to Dr. Rinn's office.

Dr. Rinn, lovely woman that she is, understood completely, and looked up the X-rays on the spot. "I've never seen lungs so lovely," she told me, and all is clear. Nothing to be concerned about.

And yet, I'm so freakin' exhausted. This whole process wears me out.

Today I put on a cute dress and flip-flops to go to Herceptin. I was determined to look as non-cancer-ish as possible. The dress is slightly low-cut, to reveal cleavage. It has a saucy band of bright color, but is otherwise a hip black color. In it, I feel good - girly, feminine, and pretty. It's the kind of dress that cancer patients do not wear; breast cancer patients, I've noticed, tend to wear things up to their necks; they tend to wear sweats to treatment. (I did - it was comfortable and I didn't exactly feel like drawing attention to my fat, bald self. I didn't feel pretty; I didn't dress to draw attention to my non-existant breasts.)

I realize now that the dress was meant to ward off my own bad feelings about cancer, to prove to myself that I'd come so far. To walk into the waiting room at the treatment center and have eyes turn toward me, the same look on every face, "What is SHE doing here? She looks so healthy! She doesn't look like a cancer patient!"

But the dress is only a disguise, and I'm horrified to remember that no matter what I wear, no matter how long I put this behind me, no matter how long my hair gets, now matter how healthy I look, I am still a cancer patient. I still get MRIs and X-rays and scans and I'm still covered in scars and I still have no guarantees. The cancer isn't fooled by my outfits, or my lip gloss. It's not afraid of my kick-ass attitude, and it only smiles slyly when I put on my PollyAnna mood and tell everyone, "I believe that the cancer is gone, never to return. Just look at how hard I fought to keep it away! Look how much treatment I did, above and beyond the standard!" Cancer knows what cancer knows. It might not come back. But it might.

I hate this simple fact. I hate that the little lurking thought - which was not just lurking, but shouting at me today - that the cancer might come back never completely disappears. I can run, I can mother, I can write, I can volunteer, I can fundraise, I can walk, but I can't earn a guarantee.

I do believe that the cancer is gone. But today, my fear was real, and justified. I got another reprieve: all is well. But it will take a while for my heart to stop beating so fast. It will take a while to recover from the fact that I have, once again, been faced with my fears head on. I can't describe this feeling to anyone who hasn't been there him/herself. If you don't know this kind of fear, I don't want to let you in on it. It's bone chilling, gut wrenching, mind blowing. It comes and it goes, but when it comes, it takes my breath away.

Breathe in, breathe out. I'm recovering from the day, but it saps my energy more than I can describe.

Now off to care for my daughter, who is yelling at me to get a new string for her beading project. Despite my mental collapse (ha!), life goes on, and duty calls.


Thursday, July 05, 2007

Still well

This morning Tessa is doing well. She ate all her cereal, drank all her milk, and dressed herself for the day. The day includes a playdate with Jessie & Emma while I go to get Herceptin at the hospital; I often bring her to this appointment, but a) she hates it, b) it's hard to entertain her while I have an IV, and most importantly c) there are too many immune-compromised people in a chemo ward to bring in a kid who has been sick for a week. THANK YOU to Katie for covering for me!

I'm hopeful that today will go well. I'm tired, physically and emotionally, after a week and a half of illness in the house (cabin). I want my summer, and I want it now!

I've received many phone calls offering love and support for Tessa....THANK YOU. Your emails and calls have meant the world to me.


All is well?

I put the question mark in the title because who knows what is up any more, but we are home after another very uneventful doctor's visit (our fourth this week for Tessa). The doc looked at all of Tessa's vitals, and said, "She probably has/had a virus. No concern at this time," which is what each appointment tells us. I would feel like a fool for going in today except that the nurse at Children's had been so adamant...and I'd rather go too much than miss something important.

Tessa had a relatively good dinner, not quite her usual but her appetite is returning. She's going to bed right now and complained of a tummy ache again but this time it passed quickly - who knows, maybe she has gas! This virus is of an unknown quality and that makes me nervous but it seems that it is disappearing as mysteriously as it arrived.

We hope for a normal day tomorrow. Katie will watch Tessa so that I can go to Herceptin, and hopefully the day will be uneventful. I got caught up on a lot of chores today - laundry, sweeping, vacuuming, bathroom, some dusting (where on earth does so much dust come from?!) and even organized Tessa's room a little and purged some stuff from her room, and after the doc we went to the grocery store for the first time since returning from Orcas, so the house is relatively caught up at last. Tomorrow maybe I'll put up the wading pool and Tessa can run with the dogs in the back yard and I will do some weeding....we'll see!


Here we go again...

After talking to Children's about the lab results (nothing unusual except that her counts still show that she's got an inflammation somewhere in her system...same as before...) about Tessa's tummy pain, crying, and subsequent napping (she's been in bed since 11:30ish), they said, "Bring her back here today or go to your primary care doc today" and since I'm not big on hospital waiting rooms :-( we have the first available appointment with the pediatrician, at 4:5opm today.

Tessa is still sleeping. No signs of fever.

I have Herceptin at 3:30pm today and I had to reschedule for tomorrow at 9:30am. I pray that by then this will be resolved. This SUCKS.

FYI, since she has pain on one side of her abdomen, I looked up appendicitis online. Her symptoms do not correspond.

Now what?

Tessa woke up today crabby, but I sort of expected this because after a week of us saying "yes dear" to her every request ("You want pizza? Sure!" and then when she ate literally two bites, "oh well do you want anything else?") due to her illness, we expected "re-entry" (Katie's term for it) issues. So, the bad, bossy, whiney mood didn't strike me as too unusual.

(It didn't grate on my nerves any less, but that's another post!)

Anyway, at about 11:30 this morning, Tessa started crying and told me she had a stomach ache, on one side of her abdomen. Then she went to bed and went to sleep.

This, to put it bluntly, sucks. I've got a call in to the nurse. What do I worry about next?! No fever right now, but....

I'm hanging in there. While she sleeps, I'm scrubbing things and putting things away and trying to get caught up, so at least there's progress there. But I don't like this, not one bit.

Wednesday, July 04, 2007

Home again and a sigh of relief

We are home from Children's, exhausted, but well.

The short version: After further blood work, another urine test, a chest x-ray, an some kind of awful nasal aspiration (vacuum tubes into Tessa's sinuses....horrible), Tessa started to perk up. The fever is gone, her energy is returning, and the tests show that some of her counts (including the CRP I mentioned earlier) are falling back towards normal ranges.

We were released before all of the tests come in as some won't be done until tomorrow at noon, but they've ruled out mono, Epstein-Barr (which is another name for mono?), UTIs, pneumonia, and some other concerns. At this point the diagnosis is "unspecified viral infection" or, in short, "we think it might be a virus." As long as it disappears and doesn't come back, this diagnosis is okay with me!

I'm exhausted. I held Tessa while she cried and tried not to think about the what if's as they poked and prodded her. I didn't enjoy that, and nor did Ryan.

Afterwards, Tessa was recovered enough to pop in at C&P for their BBQ, and we got to catch up with a few friends there and Tessa got to be a regular kid instead of hospital-kid. This is a major improvement, needless to say.

And now we're all exhausted. A quiet night for us - no fireworks, no parties - and we will just go to bed early. Tomorrow, I'll unpack from Orcas, arrange playdates, clean the house....and live in the gratitude that it looks like Tessa is healthy once again.

Thank you for your thoughts and prayers. The last time I was at Children's was to visit nephew Josiah when he had cancer.....dark days. I am grateful that this was a very different experience.


Getting ready to go to Children's

I don't want to face this day. We were going to go to the Admiral 4th of July Parade this morning, and we bought streamers and flags to decorate Tessa's bike, and she was going to throw candy from her bike basket. Then we were going to go to the C&P BBQ with friends & neighbors, and then we were going to BBQ with the Hisatomi's. It sounded like an amazing, wonderful day. We'd even talked about letting Tessa nap after dinner, and then walking her in the stroller to Alki to see the fireworks.

Instead, we have to face needles, fevers, the ER, and scans searching for "something." I hate this. Of course all of my own experiences leading up to this don't make it any easier; I can't help but remember what it was like to see my own scan results up on the light box as the doctor talked about tumors and malignancy for the first time. Will today be like that day?

If there is something awful, it will be worse than the first time. Worse, for two reasons. One, because I would know how awful the journey could become....very little is left to the imagination, having been down that road already. Two, because it's Tessa. I would go through it myself ten more times rather than have these fears for HER.

And yes, I know, this could still be nothing. I'm praying for that. It's just that I know how "something" can go, and it scares me more than I can say.

I'm off to put on a good face, to gather a bag of toys, and to take my daughter to the ER. Please wish us luck and health, and that this will become just a bad memory and nothing more.

Tuesday, July 03, 2007

What is CRP?

From the web:
Normally there is no CRP in blood serum. From Lab Tests Online, "a high or increasing amount of CRP in your blood suggests that you have an acute infection or inflammation. Although a result above 1 mg/dL is usually considered high for CRP, most infections and inflammations result in CRP levels above 10 mg/dL".
A positive CRP may be an indicator of several conditions, including:
rheumatoid arthritis
rheumatic fever
heart attack

Well, I wish I could say all that made me feel better. :-( Normal is 0 to 0.5 and Tessa's is 18.9.

Tessa update

We don't know too much.

It is not definitively a virus. It may be, but it may not be.

The WBC and CBC is all normal. Her CRP is elevated to 18.9 (normal is 0-0.5), her polys are slightly high. I have little idea what this means and I'll be researching it online in just a second.

The doc said that there wouldn't be much benefit in taking her to the hospital at midnight, so she's arranging for us to check in tomorrow morning. Tessa will get a chest x-ray to check for pneumonia and "other things" and we'll go from there.

I am trying very hard not to over-react. I am also trying hard not to throw up from the anxiety.

No update yet

I spoke to the doctor on call a few minutes ago, and the lab work isn't done. So we're still waiting, though it's past the time I'd been lead to expect.

I am not patient, and this is difficult.

Tessa is sick and I'm scared

We are back from Orcas Island tonight; we got home about 5pm.

Tessa has had a fever since our first day on Orcas. It spiked at 103.7 (digital mouth therm.) on Saturday, and it's remained above 100 for days. We have been on the phone almost every day with the nurse at our local clinic, and yesterday we took Tessa to the doctor on Orcas Island. He couldn't find anything wrong, other than her fever, lethargy, achiness, and lack of appetite.

Tessa has spent much of the past week -and it's been a full week- lying in my arms, sleeping, or sitting still, not even wanting stories. She rallies for a couple of hours to play Play-Doh or something, and then she drops off again. She naps for hours each day, multiple times per day. Over the past two days, when she should have been getting better, she has gotten worse than before. She doesn't even want to hear stories, she just sits with a glassy look most of the time. She slept the entire ferry ride, she slept on the way home, she asked to go to bed as soon as we got home.

We made an appointment with our local doctor as soon as we got home, and we saw them at 6:20pm...I just got home 20 minutes ago.

Unexplained fever lasting a week is concerning. Tessa's urine tests come out normal, and her eyes, ears, nose, mouth all look normal. Her breathing is normal, her heart sounds good. Finally, we had to do a blood draw (Tessa cried and shook in my arms, allowing the test to happen but still screaming "Stop! Please stop!" and it was awful) and now we are awaiting the test results. Her in-ear temp was 102.5 today.

It's 50/50 right now if we have to go to Children's Hospital tonight for more tests....x-rays and scans. This makes me sick to my stomach. I know what x-rays can look for, and it's not all about broken bones. I've had too many scans not to be scared at their mention.

I should hear test results by 10pm - they rushed the blood over to Children's Hospital with a "stat" order...a courrier was coming to get it. If the blood counts indicate a virus, we're in the clear (it won't mean that Tessa's better, just that it's "just a virus") and if the CBC doesn't indicate a virus then we don't know what it means, and we'll have to do more tests to rule everything out.

Please pray that my daughter is well. Please wish, hope, cross your fingers, send good thoughts, and pray that she is healthy, and that this is "just one of those things" and nothing to be concerned about. Please pray that I will be strong and steady and able to smile for her, and that my fears will not show, and that I will be brave so that she can be brave.

I'm so scared.