I just can't have blind faith in my doctors.

I'm what is called a highly motivated patient. Because of my age, 40, doctors choose to treat invasive lobular carcinoma in a very aggressive way. Radical mastectomies, heavy rounds of chemo, radiation - all of these are being used to bombard the cancer and beat it into submission.

One of the most frightening aspects of having breast cancer is that we have to trust our doctors. Pure strangers, and they hold our lives in their hands. These people guide the life and death decisions that I'm making right now. And I can't trust them blindly.

Why? They're human and can make mistakes. Case in point. My tumor was missed by the mammogram, sonogram, and MRI - the very machine that was used to help us make a decision about the left side. My MRI on the right breast, my "bad" breast, came back normal. It wasn't normal. And it wasn't the machine's fault. It was the technician's who though they were making an accurate reading of what they saw. They weren't.

Luckily, we chose to do a double mastectomy regardless of the MRI results. It's a good thing we did. Hidden under the mess of small pockets of calcification (Stage 1) was a 4.5 cm tumor (stage 2) that was throwing out tentacles. For this reason, I do not have clean margins to the skin level.

This 4.5 cm tumor was not visible on any test.

That means it was only found when a chunk of my right breast hit the pathology table.

My other point goes to the heart of me. I've always been a cup half full kinda person. I'm not right now. I thought the results of my PET scan would elevate me mentally. It has a little but not much. Why? I think lurking in the back of my head is the worry that I need answers that my doctors can't give me. They are reassuring me that I'll be here 5 years from now, but not telling me that I won't die from this. It's not their fault and I do understand their position.

I don't want to "battle" this disease for the rest of my life. I want it gone and then I want to move on. I have kids to raise, a husband to adore, and a life to live. I want to write my book, I want to go to Hawaii, I want to see my grandchildren. And my doctors can't tell me if I'll be able to do that.

I'm facing chemo starting next week. My kids and husband will see me at my very lowest and I need to be strong for them and me. It shapes you when you see pain on this level when you're a child. My Jackie is very careful with me now, afraid she'll hurt me if she touches me. It brings tears to my eyes to have Steffie kiss my arm instead of throwing her arms around me. It's too painful to hug my kids.

One day at a time. I keep telling myself that. One day at a time. I'm trying but I'm scared. I'm very scared.

My mother's marker test came back positive last week. That means there is cancer somewhere in her body. The doctors are trying to find it with bone scans and PET scans. PET is tomorrow, bone scan was today.

This is far too much for one family to bear.

Finally!!!! Good NEWS!!!!!!!

This picture about says it all.

My CT/PET scan came back normal!!

This was the one thing hanging over our heads--did the cancer move to another organ in my body?? Well, it hasn't.

Hence the happy picture!!!

Another procedure today...

I get my mediport installed today. Oh Joy!

I really have just started feeling better, not alot better but a little. The pain is lessening, as is the swelling. Now I'm back in for the installation of my mediport which, I'm told, will increase my swelling and discomfort. Hence the "oh Joy!" comment.

I haven't been too happy lately but I guess being sad about all this is normal. It's too easy to say it's an emotional roller coaster. It isn't. I'm sadder at night than during the day and that's probably because I'm tired. I don't sleep really well when I feel perfectly fine.

I told Jackie last night about my hair falling out. She was distressed but not overly so. She wanted to know why the medicine would make it happen and who would be giving me the medicine. I imagine in her fertile little mind that she thinks she can keep me away from the doctors and then my hair won't fall out. She also checked with Daddy to make sure he wasn't the one giving me the medicine.

Jackie also made sure my hair would come back. Since she likes to fiddle with it, we devised a plan that she could play with Sissy's hair and her own. But not Daddy's since his hair is too short!

Both my angels are at school today. That makes this mediport installation easier since I'll be getting out before they finish school. I imagine I'll be really sleepy from the general anesthesia. But they can snuggle and watch a movie with me. Thankfully, it's a slow week at Steffie's school because it's back to school night tonight and an Archdiocese day off on Friday. Less homework = less work for me.

Jackie seems to be adjusting to school but she's telling me now that she'll miss me. I think she's worried so I need to approach this carefully to pick her brain. Steffie is so good at compartmentalizing things that school is a great escape for her. I really like her homeroom teacher. She's supportive and firm at the same time and seems to be a good shoulder for Steffie to lean on when she needs it. My girl is bringing home some serious good grades right now. I'm incredibly proud of her. She's a rock, my Steffie, and so good at listening even at her tender age of 11. She wants to climb into my head over everything and I tend to let her, within reason.

This post is all over the place. Must be because I'm tired.

Like stepping off a curb

In the 2 weeks leading up to my double mastectomy, I truly thought the very worst part of this whole nightmare would be having both breasts removed. I worked myself into a anxious mess over this, crying every day while I took my shower so my girls wouldn't see how sad I was. It's traumatic to be facing this at my age; to have so many unknowns.

I ended up requesting an anti-anxiety pill the day of my surgery. Yes, that's right. You can take something to calm your nerves even on the day of surgery. It was pretty funny when we went to the get the prescription from the pharmacy. Same copay of $7 but only one little pill in the bottle. Whether it's 30 pills or one, it's the same copay. Gotta find our laughs where we can.

Right before I was being taken to the operating room, the nurses requested that Bill leave. He had been with me during the entire time. The nuclear med shots, the nuclear scan. He'd helped me change clothes and held my hand the entire time we waited for the end of me as I was. When they made him leave, I lost it. Two wonderful nurses, Maria and Marilyn hung onto me, cried with me, and got me sedated immediately before I even left the OR prep area.

When I woke up in recovery, it didn't occur to me to even check my chest. I was groggy and ended up spending close to 4 hours in recovery as they prepared my room. Somehow, the woman who had checked me in had arranged for me to have a private room. Bill was able to stay with me the entire time.

The kindness of complete strangers was absolutely amazing.

I realize now that the worst thing that can happen is not a physical change but rather simply not being here at all. I'm a black and white kind of person and for the most part, the cup is always half full for me. I want tests done and tangible proof that I will come through this okay. Those tests are being done right now. My bone scan came up clean. I have a PET in a week - with fingers crossed and many prayers for no mets found anywhere.

The horrifying part isn't losing parts of me, but rather what was hidden from the MRI, mammograms, and sonograms that were performed on me ad nauseum. This was a surprise to everyone, including my surgeon. It's truly amazing that cancer can be so hidden, so tricky that it can go undetected even by the very best tests. Literally, the extent of the tumor was not known until the samples hit the pathology table.

It was pure chance that my breast cancer was caught and pure chance that we made the correct choices with the double mastectomy. Losing parts of me are pretty irrelevant at this point.

My daughter has asked me many times how I can deal with the scars and I tell her it's a badge of what I've left behind. Like stepping off a curb, the cancer is gone. And with it comes acceptance. I hope losing my hair is the same way.

Lymphedema

One of the frustrating parts of recovering from a double mastectomy is the inevitable swelling from the lymph node removal. I had a total of 8 nodes removed and since my drains were removed, there's been swelling across my chest with a good deal of it concentrated under my arm.

I got tremendous relief last Friday when my doctor aspirated the fluid. 90cc's later and I could place my arms against my side again. It's alot like having a tennis ball shoved into my armpit. What's most annoying is that as the fluid gets retained, the pain radiates from under my to the lower part of my shoulder blade. It's rather uncomfortable.

Lymph node removal screws up the draining of the lymphmatic fluids. Remove a few nodes and it's like swiping out a few necessary filters for this system that it functions in the transmittal of cells throughout the body, among other things. It can also transmit cancer cells, which is why lymph removal is an integral part of effective cancer treatment.

Once some of this system is removed, it's up to the body to adjust to the loss. During a mastectomy, drains are installed to release the fluid buildup in the body cavity. After a week or so, these drains are removed. Then comes the body having to deal with the buildup of fluids.

I've dug around the internet searching for something to ease this transition that my body is going through. I'm not finding much practical information. Just basically how to cope with it never going away. I've read that good arm care is great, watching heat and cold, and compression garments are important but I've found very little on basic comfort during the immediate time after drain removal.

I have found that my arm is terribly weak. Writing is a definite chore as I cannot control the pen very well. My hand gets so tired so fast. I can't lift my arm high at all, just shoulder height actually. It's pretty annoying. I felt like a million bucks when I was drained last week!

So what to do? I do my exercises (arm lifts in various directions), I color with my daughter because this is strengthening my arm, and I take it easy. I lift nothing that is heavy and only unload the dishwasher of the things that fit in drawers and the lowest cabinets. Folding clothes is a painful affair so I don't do much of that. Worse case scenario is that the incisions will burst if the pressure becomes too much. I am way far away from that point but getting sick of being all swollen.

However, I do think I might be making a phone call to the surgeon tomorrow for a draining. I have a mediport installed during a surgical procedure on Tuesday so I can start chemo on Sept 23. I'm praying my doctor will roll his trusty sonogram machine in the operating room and drain my fluids while I'm snoozing under general anesthesia.

I so want this swelling and my pain to be under control before I start chemo.

Sanity is in the paws of my animals

Those paws hold a great power over me. They give me a reason to get out of bed. Plaintive meows tell me that they want their breakfast. I'm still Momma cat to them.

And I'm quite sure that they know something is wrong. But that something isn't more important than the rumblings in their bellies.

Almost every day, I'm up feeding these critters. And my 4 parakeets, my Eastern box turtle, my hermit crabs. These guys all bring a forced normalcy to my life that I dearly welcome. I'm able to take care of the animals despite the painkillers that I'm taking all day long.

My younger cats have caused the bird cage to be moved about 1 foot from the ceiling. I can handle the seed and feed cups but not the water. I have just about lost the range of motion in my right arm from the lymph node removal. It's coming back but my arm is weak. Can type but my arm gets tired writing.

Back to the story.

My dear old kitty, Maui, was so bent out of shape with my hospital stay that she stopped eating. She's a little thing, so thin and so old. 4 days without me and she was just a whisper of what she was when I left. Bill and I rallied her with forced water and dabs of food and finally, placed a bowl of cooked dark meat chicken and bland broth in front of her. We stroked her appetite with this for 2 days, got her strength up and then started antibiotics to deal with whatever was ailing her. It worked.

Her appetite is that of a roaring lion right now. She's eating small amounts about 6 times a day. She's sassy, stealing food from the boy cat's bowls, and talking to me again. She's sleeping better and drinking as she should. Thank the Good Lord. We don't need another tragedy in this house right now.

My birds still hold their "Town Hall Meetings" whenever the seed cups are filled. There's a great debate over who will visit what, and if there's a millet treat in there, it's like a meeting of the UN. They carry on so much we need to shush them to hear ourselves think. Happy bird chatter is a balm for the soul.

Critters are a joy. Always. But especilly now because their antics are a great distraction every day. Clyde the ragdoll is a character, a true-to-life trickster who's into everything all day long. He's great at playing pitiful when he gets in trouble and he's so stinking cute, he never really gets reprimanded. The squirt bottle I bought weeks ago sits unused on the hutch!

O'Malley is my gentleman; the handsome orange tabby pictured below. He's so very tolerant of Clyde's rambunctious self. I'm glad we adopted Clyde though, because these two romp and play for hours on end. Maui just isn't able to be a playful companion for O'Malley. He's now got a partner in crime. I'm on to Clyde though. He tries to cook up ways to blame O'Malley for things but it doesn't work. My antenna are up!

There's a peace that these animals bring me. Their daily drama is on a simpler level than my children. It's basic. It's food, it's water, it's gentle reminders that I'm here to care for them.

It's just totally normal. And I need normal.

Where's my checklist?

You wouldn't think that flying by the seat of your pants through the diagnosis, surgery, and subsequent treatment for breast cancer would happen to anyone. But it is.

There's been a number of extremely important things that almost slipped through the cracks here because I simply didn't know or wasn't informed that a test, report, or visit to someone was necessary. There's no checklist of things that need to be done with a breast cancer diagnosis. No list or order of events. And there needs to be.

Case in point: checking the rest of me for cancer.

This would seem like a big deal. You would think someone would direct me, somehow, of what came next during the month long recovery after my surgery. Nope. I found out that I should have a bone scan and a PET scan to check the rest of me for cancer. But I didn't find out from a physician. I found out from a friend on a message board that I frequent. Imagine that.

And I had to ask for these tests to be done.

So this post is to remind me to compile a list of necessary things every breast cancer patient must know, and do, from start to finish. Every loop must be closed, every part of you must be checked. Everyone might have questions but not everyone's questions are the same. So even seemingly stupid things like "Can I get dental work done during chemo?" needs to be asked and answered.

So I'm mentally compiling my checklist and I'll post it on every blog and site I write for. Plastered across the internet, I'm hoping it will help someone from feeling the complete depression I've felt over the last few weeks as I sat here wondering if something was wrong with the rest of me despite the removal of both breasts.

This whole thing might be tolerable looking at it one day at a time if I knew that I was only dealing with cancer in my breasts.

Bringing home a monster...

Being 3 is a great big deal. Jackie's in school now and frankly, she likes them more than us. I guess Mommy is boring now. That's ok. Even I think I'm boring as I sit here recovering from surgery.

So last Thursday, Jackie goes for her second day of preschool. It's on a horse farm and the kids are outside for a good portion of the day. There's a huge playground where the kids end up at the end of the day. All of us pile in the car at 5 to pick her up and she refuses to leave. Bill drags her to the car, kicking and screaming.

She was so filthy she had dirt embedded in her scalp. Her tears made brown streaks down her face as she cried that she couldn't leave her friends.

So we get home, after she's hollering for 3 miles "Let me out of here!!!" referring, of course, to her car seat. We get into the garage and she decides she can't go inside. She's still crying, sobbing actually. It's clear to me that she didn't take her nap. The first sign would be that she's acting like the exorcist.

I try to get her into the house with the promise of a tubby full of bubbles. No dice. She tells me she won't be coming in until she's feeling better. Bill and Steffie had already provoked her to the point of screaming so I chased them away. I sat out in the garage with her and asked her what I could do for her.

She doesn't need to know that she crushed me by telling me to take her back to school. I'm actually very glad that she loves it there but I miss our quiet time together at home. We always have company now since I can't watch her alone, nor stay alone because of the medication.

Anyway, it took me well over a half hour to coax her inside. She wanted to tell me why she needed to be with her friends, about the kids who kept her from taking a nap, and how she got so dirty. I just listened. That's exactly what she needed to get over her mad.

She's a pip. She had her bath, a snuggle from Mommy and stopped being a monster. What else could a Mommy ask for???

Back to school last week

Week #2 of the 2008-09 school year. We have one going to preschool for the first time, one in middle school for the first time, and one in college as a freshman. 7 years between each and you'd think it'd be easier but each one of our girls has faced major changes at school and major changes at home with my breast cancer. It's a tall order to fill.

Being a planner type, I organized everything the girls needed and had it all taken care of before I had my surgery August 21st. Or so I thought! What's pretty funny is that Steffie is the one who I really have to worry about because she's in uniforms. The uniforms even dictate when the weekly laundry is done! Well, this year she switched to a pleated skirt from a jumper and despite my planning, we had a great big crisis! These skirts, every single one, fit differently! One was so small, it wouldn't even fit around my skinny, minnie Stef.

Remember that it is possible to be fashionable while wearing a Catholic school uniform...or at least she seems to think so.

She really does look cute in her uniform. Now that it fits. We ordered 2 skirts and both came back wrong. One was never altered in the length and the buttons made the pleats lay funny. So right after school on her second day, I ran her up to the Redland Cleaners to the tailor. This lady is wonderful. I bribed her to fix the skirt in 3 hours. She did it! Thank you Jesus! Steffie had something to wear to school.

The other skirt needed to be returned.

So Steffie's father had ordered 2 more skirts a few weeks ago. After a blistering phone call to the uniform store in which I told the lady something was wrong with the second skirt, I also got word the two extra skirts were in. So off we go, right in the middle of Tropical Storm Hanna.

Someone must have decided to cut us some slack. Both altered skirts fit perfectly. And they exchanged the mutant skirt. I've decided I'm holding the unaltered skirt for when Stef has her Fall growing spurt (and when all of these uniform skirts won't fit anymore).

Lots of drama. All of this, less than 2 weeks out of double mastectomy surgery.

I should get a gold medal!