Tape

Argh!!!!

I have never felt anything so goose-bump, teeth-gnashing awful as having the tape pulled off the incisions on my chest and the cuts under my right arm protecting the lymph node incision.

I swear it's barbaric.

My chest was covered in gauze pads surrounded by this fancy surgical packing tape. This stuff went from the top of my chest near my collarbone to my ribs. I thought the only thing I had to worry about with my recent doctor visit was how it would hurt when the drainage tubes came out. Not so. The tape removal hurt worse!!

I think it's called breathable surgical tape but for all I care, it's damn packing tape to me. I'm now minus every single solitary tiny little hair I had on my chest. It hurt like the dickens!

Tape is my nemesis.

The tape in the picture caused me no end of problems. See, I've discovered I'm allergic to it. This, of course, was after I had this stuck to my arm for 4 different IVs over the course of 4 days. I have marks and tape residue on my left arm. What I didn't know until I got home was that an allergic reaction to this involves itching until the itch forms blisters. Then the blisters pop and scab. Some of these spots continue itching until the scab comes off, then finally heal. I''m down to 5 spots still healing. Stupid tape.

By the way, a good way to get rid of tape goo is to coat the area in Neosporin. This loosens the tape residue.

I asked the plastic surgeon if he could use paper tape when he covered the drain holes with gauze. Of course, he didn't have any. So I was itching something fierce by the time I got home. This time, it was on both sides at once, which presented quite a problem. I'm limited in my arm movements so itching was most difficult. We replaced the plastic tape with paper tape quickly and thankfully, it's not blistering this time. Little victories!!

I'm taking my own roll of paper tape with me in my purse whenever I have doctor visits from now on. On top of how miserable I'm feeling, the last thing I need is itching from stupid tape.

Stupid tape.

I *had* breast cancer

It's been a pretty crappy day, actually. The pain I'm feeling from the lymph nodes is increasing by the minute. So naturally the muscles in my chest are tensing with a vengeance. It hurts. I've resorted to the heating pad.

I think today is the first day I don't feel like I have breast cancer anymore. Why? Well, I'm still sitting here waiting for test results from the doctor who SAID he would call us today. He didn't. But I feel that between my surgery and my chemo treatment, it'll be gone. But I have more of a reason for saying it is so.

Tonight, Steffie had a meltdown because I wouldn't do what she wanted me to do. I reminded her I was tired, we needed to be together as a family, etc., when she wanted to watch a movie with exclusively just me. This is after she spent the entire day piddling around, watching TV, napping, and visiting friends. So when she snaps her fingers, I'm supposed to come running. I don't think so.

We got into it. I reminded her that people in pain who get upset easily have a rise in blood pressure, which increases the pain. She kept arguing, then crying. I sent her to her room. I'm not into her guilt trips and she's very diligent at them. She always sees the light within a very reasonable amount of time. Anyway, she came to tearfully apologize about 15 minutes later. It went like this:

Her: "Mom, I'm sorry, but, you just don't know what this is like. It's hard, it's really hard to have a Mom who has breast cancer."

Me: "I don't have breast cancer, Steffie. I had breast cancer. It got cut outta me last Thursday."

Her: "But Mom this is still hard. There's so much to worry about. You still had cancer and that's hard to deal with."

Me: "I had it, it's gone. Don't use my illness as an excuse to be difficult."

You get the picture.

I'm not saying I need to act "healthy" to prevent these meltdowns. I'm one of those parents that feel it's very important for kids to see their parents show a complete range of emotions so they develop a healthy attitude for expressing their own. Throw in that I'm Italian and German and married to an Irishman and it's not very quiet around here.

It's clear she's trying to manipulate this situation to her advantage. Guilt works wonders, except when I've got my antenna up. I know I'll be constantly reminding her not to play her games but then, I feel I would be doing that with or without the breast cancer.

In any event, Steffie gave me a revelation today.

I do realize that I "had" breast cancer. I'm not arrogant enough to say I'm 100 percent cancer free but I'm heading in the right direction.

Aftermath

No matter how much we prepare, we're never ready for the blows life throws our way. I thought I had my program together before surgery. I did at home, at least. But I sure ran into the unexpected at the hospital.

My surgery was on August 21st. Everything went well and in fact, healthy tissue was used from the left side to help reconstruct the right breast. They deemed it safe enough to use. Everything went really well until I ended up in the recovery room. It took nearly 4 hours to get into my room. A private room. I thought I would be good to go.

Not so.

Dispensing pain medication is difficult in hospitals. The on-charge nurse had me set up to have a dose of morphine alternating with a dose of percocet every 2 hours. Perfect pain management. However, it requires the nurse to show up with the pills and to hook the vial of morphine to the IV line. She didn't show up at all for hours at a time.

A few things that surprised me:

• The chest muscle pain was atrocious. I couldn't move my arms past waist height or push myself to a sit or even to recline. It was excruciating.
• They capped off my IV line as soon as I moved into my room. It was used to dispense meds but not fluids.
  
• I had a catheter, which I expected but they expected me to go to the bathroom on my own within 12 hours, which was next to impossible without proper pain medication.
• Blood pressure and IV's cannot, under any circumstances, be taken in the arm where lymph nodes have been removed. I was surprised I wasn't given an arm band for my right arm saying "NO IV, NO BP." Quite a dangerous omission, especially because I had to tell every nurses aide exactly why I couldn't have my BP taken in my right arm.
  
• Everyone in the hospital must absolutely have an advocate! Whether it's a family member or friend, the care isn't adequate with nurses alone.
  

Recovery is a thousand times faster with proper pain management. I ended up staying in the hospital for 3 days, Thursday night until noon on Sunday. This could have been avoided if I'd been cared for properly. Proper care is more than checking BP and temperatures. I saw my nurses maybe twice that first night. I was beyond myself when my doctor showed up at 7:30 the following morning. He told me that if the pain medicine didn't get dispensed properly, to ask for a pain pump.

I ended up requesting that by lunchtime. The nurse at the time felt the need to remind me that I was one among many and that my pain was probably less than the other folks on the ward. I reamed her out, told her to quit patronizing me, and that I wanted a pain pump if she couldn't deliver my meds every 2 hours like she was supposed to. It was ugly.

In addition, my veins started collapsing so I went through a second IV installation. I argued with her about it hurting, she said it was fine, then lo and behold, a bubble appears below the skin. To say that these people wouldn't listen to me, my irate husband or my livid mother is the God's honest truth. Pride was more important than my comfort.

It finally got under control with my pain pump. I could dispense as I saw fit and I had a wonderful nurse Friday night. Hilda was great. She did something that really surprised me. She said she wanted me to tell her what operation I just had. I asked her if she had read my chart. She countered with, "I'd rather hear what you have to say about your surgery and how you're feeling." She was great.

I felt thousands of times better when I woke up Saturday morning. My biceps were less tense and boy, was I pleased. Dumb as it sounds, I was certain I would never be able to sit up on my own again. We decided that I would stay one more day because I just couldn't imagine trying to get in and out of my own bed when I was hurting do bad.

I had a visit from my plastic surgeon Saturday and he said women typically go out of the hospital within 24-36 hours after double mastectomies. Of course, that's with proper pain management. He told me I could stay as long as I wanted and he gave me the power to decide when I wanted to be released.

Two more IV lines later (all in my poor left arm and hand), I had had more than enough. I asked for my pain meds and antibiotics in pill form and blew outta that popsicle stand Sunday morning before noon.

I was SOOOOO happy to be outta that place!!!

I'm not gonna do a countdown...

I sit here watching the clock, waiting for my one final day as me with my family. We have plans...plans to go to a petting zoo with the girls, plans to do chores, plans to finish up my preparations for going to the hospital. I have a bag to pack but who knows what I should put in it. I've no idea.

I know that I'll be sore after surgery. I'll hurt but then my lumpectomy and biopsy hurt terribly. They still do. I'm not worried about that. It's the loss of me. The mental side of this whole thing has thrown me for a loop. Dealing with day to day craziness has just become so hard to do. Errands aren't a distraction. It's just one more thing to tick of my list before the Day.

I've got a prescription now to calm me the day of surgery. Called in by my surgeon's nurse. I'm sure she's dealt with many patients but frankly, she's not the warmest individual. I don't like talking to her so I let Bill handle it. Two more boobs gone ain't a big deal to her. Just a number, I guess.

That's what bothers me the most. I'm one of many. Not just me. Not a whole of me. I don't' want to hear anyone's story. I don't really care, to be honest. I'm sorry it happened to whoever wants to tell me their story but you are you and I am me. I know I'm gonna be part of the pink ribbon brigade and frankly, I couldn't care less.

I'm certainly not going through this whole thing according to some recipe. That's the gist of what I hear from many people. This will hurt, this will happen, you'll do this, then this will happen. You'll feel like this, then it won't matter. Whatever. So glad my breast cancer fits your formula for how I'm gonna feel and how I'm gonna behave.

No, the blog colors weren't changed because of my breast cancer. It was changed because the blue was boring.

The waiting is absolutely overwhelming. I sit here at 10:30, Olympics on the TV, watching my exhausted husband catching a few winks. We're both so tired. Bill especially. He's working, and worrying, and trying to make sure I'm on an even keel. I want someone to take care of him since I won't be able to. I don't know what to do. He's been a rock, he really has. He'll need a break at some point and if I know him, he won't leave my side for a minute.

Maybe tomorrow will be a week long. I can wish, can't I?

Jackie's Flowers

Jackie planted these seeds at the beginning of the summer. Being just 3, she's astonished that flowers have shown up on the spindly stems of her zinnias. Jackie exclaims every time she sees them, "Oh My Gosh!" It's pretty cute, but then she's a drama queen.

Jackie planted these flower seeds after I swiped her Dad's precious zinnia annual packs to fill a plant pot. She said she was planting some for Daddy for his birthday. We watered them carefully, watched them grow every day and have babied them through the hot summer. What an incredible first effort on her part.

She loves the fact that the butterflies come to eat at her flowers although she doesn't really understand why. Jackie is simply thrilled and wants to plant seeds all the time.

The truly astounding fact is that some of these plants are almost 5 feet tall. I've never seen homegrown plants from seeds grow so well. There's just got to be something akin to steroids in the Miracle Grow :)


A little inspiration amidst the madness. 3 days to go and I'm visiting our parish Priest today, as is Steffie. Looking forward to it. Even though it seems I can handle the breast cancer, I want his guidance to help me walk with grace through this, to help my children and husband cope, and to still be a good Mom to my kids. A little blessing never hurt.

One day at a time

A dear friend told me last night that I need to take this one day at a time. 1 minute, 1 hour, 1 step. She went through a devastating illness with her daughter. And she adamantly told me that the only way she could cope was one day at a time. Just right now, just this minute. It's gonna be a big change for me.

I'm a planner so I organize way ahead for things. I need to quit thinking that way until this is over. I guess laundry days won't be Monday and Tuesday anymore - they'll be when someone gets to it. Cleaning up the toys right before bedtime won't be the usual anymore. Everyone around here is in for a rude awakening soon. They'll have to find their own lost things, wash their own dishes, track down their missing toothbrushes and hairbrushes. But I think they can handle it.

Jackie is having a very hard time. At 3, she simply can't cope too well with the anger she's feeling that I'm sad. She's acting out by being nasty to her sister. It's gotten way out of control. She screams and cries at the slightest thing. Everything must be her way. I've decided I'm going to discuss this with her every day. I don't want her to be broadsided when I go into the hospital.

I've told her Mommy has a boo boo inside her breasts. I also told her they will be taking it out and giving Mommy new breasts. My reasoning behind this is sound. Children need information and if she's walking around in the unknown, she'll be even more afraid. Not only that, she's a half-pint linebacker. She throws herself into my arms. She can't do that right now and probably won't be able to tackle me for quite some time. Far and above the most important thing is that she understand Mommy will be fine. She's not gonna believe it until she actually sees it.

I'm just 5 days away from surgery now. The waiting is nerve wracking. Hurry up and wait.

Skin

I'm a firm believer in taking care of my skin. I guess at this point, that's a bonus in my favor as I sit here waiting for breast reconstruction magic to be performed by my plastic surgeon.

Hey, I never said my breast cancer blog wouldn't include some tips for women who don't have bc!

I'm a big fan of lotion. Preferably baby lotion. It's mild, it's not sticky, and it's cheap. I use a lot of it on me and my girls. Every day and night without fail. And this diligence will pay off ten-fold with soft and pliable skin during my reconstruction. Sounds dumb but I'm taking the positives wherever I can find them.

Lotion is good stuff. I like eye creams too and I've been using them for years. My dear departed Grandpa told me many years ago that he always found the hot ladies cause he had so few wrinkles. Sunglasses and eye cream. Boy was he right! I listened to that advice given to me by this man in his early 80's who was still hot on the dating trail up to the very day he passed away in 1996.

Grandpa's good advice has paid off. I've got very few wrinkles, if any. Just laugh lines. That's it. SPF facial lotion every day, without fail. Grandpa was right. Good thing I applied this concept to the rest of me. It possibly just might improve my healing and scarring.

Water - I need to drink more of that in the next week and really be hydrated before my surgery. I've been thinking about the nutrition side of this and how best to get myself geared up diet wise for chemo. But these things flit in and out of my brain so fast, just like the thoughts on my skin. That's why I'm blogging it, I guess.

I'm actually writing today, which is good. A few paying articles with little research. Feels good. And I'm trying not to push myself too much so I don't wear my brain out. I've got so much on my mind that I don't want to go on overload again. The tears have only come twice today, again right now because I'm writing about it.

I need a box of internet tissues.

Sore boob and grumpy just about covers it

Thank God the Olympics were on yesterday. I didn't really get out of my nightclothes. Didn't feel like it and literally, there's a rather painful burning sensation going on in my right breast. It pretty much hurts all the time now.

I'm guessing it's from missing tissue and nerves from the lumpectomy. I had no idea it was going to hurt so bad 2 plus weeks after the procedure. Chalk this up to something else I wasn't warned about. I went through all my postoperative stuff - there's nothing in there saying my boob would be sore enough to make me want to puke. Thanks Doc!

I guess I need to brace myself for the worst eventuality with the bilateral mastectomy. Especially because I just read the preoperative information from the doctor and it doesn't differ very much from the lumpectomy instructions. Something isn't computing but I guess since I'll be in the hospital for a few days, the nurses will make sure I have all the information that I need (I hope).

I quit smoking after our family reunion on Saturday....hence the "grumpy" title. We'll see how that goes. It's going ok now but I'm really having a hard time even with the help of my trusty Smoke Away pills. Not the same as a smoke. But then I guess nothing is the same. So far, I'm not replacing it with lozenges or gum - I want to quit, not pick up another bad habit.

Having a blast here.

Kids will be kids

I have to share this story, not only because I need a break from the heaviness inside my brain, but because this truly tops what Steffie did last time when she visited the missing brain cell department.

Steffie's dear friend came home from a 6 week trip to the Philippines. Of course, as soon as the jet lag had lessened, these two monsters had to hook up. After camp, we went to get Veronica and the pure happiness radiating from these two was absolutely delightful to see.

The first plan upon hitting our house was how to prank Daddy. I stopped that in its tracks. My husband is fond of telling a story about how these girls wanted to string up a brick in our cherry tree and have it whack him in the head when he opened the mailbox. They've shaving creamed the toilet seat, propped things on the tops of doors, etc. You get the picture. These girls, together, are crazy.

So they decided to paint themselves with war paint. Stripes across the face, painted ears, etc. V was first, then Steffie, then Bean, who was so proud to be included in the fun with the girls. We've got great pictures of them.

What we didn't know is that these girls had painted themselves with nail polish, on their skin, in their ears! Steffie had her name painted in inch-wide letters on her back. Her knee was solid blue, her foot was solid purple and the nail polish wouldn't come off! Multi-colored squiggle lines running up and down legs and arms. And don't forget the ties - every one a different color!

The only remedy was simply dumping nail polish remover on the skin and scrubbing.

Much complaining ensued. I was particularly worried about V's ear because the kids painted them with nail polish inside. Yes, I said inside the ears. Not down into the canal but inside the ear shell. I cannot count how many times I wanted to slam my head against the wall.

Between these two girls, the one brain cell they have doesn't apply logic to anything. If I hadn't been so glad to see V, I would've throttled them both.

But I will give these girls credit for something. Amidst all the sadness and upset, they somehow managed to take being "normal" goofy kids to a whole new level.

This enscapsulates my day.

This adequately shows how I feel regarding surgeon's schedules and inattentive nurses. Enuf said...

Waiting...

There's a lot of waiting. Waiting for the next appointment, waiting for a day to pass, waiting to see if I can handle a full day alone with my breast cancer so my husband can get some work done. Waiting...

I'm waiting right now to see when my surgery will be scheduled. I was supposed to hear yesterday but didn't. So I think I've leave a message so I have some clue what's going on. I feel very strongly about having this operation done and being home for my girls before they start school on September 2. Mom told me to be a little bit firm about it. Funny part of all this was that when I scheduled all of Mom's initial surgeries, I was loaded for bear and telling them to schedule it all when we wanted. Not so this time.

Jackie goes to her very first day of preschool that day. I'm excited for her. Since her preschool is on a horse farm, she'll be hiking and playing outside so much that she needs a good pair of rain boots and a pair of slippers for when she comes inside. That's a pretty easy order to fill.

Steffie is a little different. Since she's in Catholic School, she wears uniforms. This year, we needed a whole new set. We'll have to have those fitted, which is a hassle so I might need someone to track down her uniforms while I'm in the hospital. The funny part about a uniform kids as that she still wants to "get ready" for school. I love it cause I don't have to buy clothes. She loves it cause she gets new school supplies, new underthings, socks, nighties, shoes. I always try to make an appropriate big deal of it all so she doesn't feel left out of the "back to school" chaos.

Kate is heading to college so what she needs is different than the two younger girls. I'm really thankful that we bought the biggest duffel bag ever made by LL Bean and a rolling trunk and stuffed it full of school necessities for a graduation present. But again, I want to have all of her things accounted for and to make sure that's she's happy with her things for her dorm room.

Just Mom stuff, I guess, but very important to me.

So which day is worse?

It's pretty hard to top the day we found out my initial diagnosis. But yesterday came close.

We saw both the oncologist and plastic surgeon in the same day. That was rough. What also made it so rough was having to make decisions that affect the rest of our lives. The "our" part is important because my husband and I are a unit. We act together, in everything. Breast cancer doesn't make it different.

We got lucky. We like all of our doctors and really don't feel compelled to go searching for others. All of them are kind, all are concerned but I gotta give some points to our oncologist. He's a gem.

Most people don't go searching for an oncologist until after their surgery. Not me. I'm a organization freak. I know I wouldn't be able to assess my situation accurately after life altering surgery. So I had to meet his guy now, before I hit the table. And I'm very glad I did.

We decided before seeing the oncologist that he was the perfect person to confirm our initial diagnosis. He did that. We also addressed our fears of the future. I might have had a clean left MRI but I was still concerned with the ongoing monitoring for the rest of my life. What I learned was that the "probability" is really probability at it's precise definition. No one can really tell me squat.

So knowing that, we decided to look at what we knew. There's a higher chance for women with DCIS to have another round happen in the other breast. That's gray hair and wrinkles to me. It's dark clouds and worry. We have three kids, we enjoy our lives, my husband has hundreds of softball games to play and I want to see them. We both don't want to worry anymore.

Bottom line: we don't ever want to be diagnosed with breast cancer ever, ever again.

So, we decided to have the left side removed too. It's preventative maintenance (sounds like my car) but there it is. Get rid of the boob, I don't worry. It's so infinitely simple and so emotionally complex, it's hard to comprehend.

Some very hard facts smacked us directly in the face yesterday. I have a 30-40 percent chance of early-onset menopause. I will need to be checked for sterility after my chemo. Oh yea, I will be getting chemo for 12 weeks. So my secret hope got tossed out the window with the basic fact that any lump over 1 cm is treated with chemo. Mine was 1.4 cm.

We decided, with the oncologist's help, to not have any more children by freezing eggs. This was rough because if ever there was a man on this earth that deserved a son, it's my husband.

What we didn't know until yesterday was that it's much easier to construct matching breasts when the plastic surgeon is working from a clean slate and not trying to match an existing breast. I don't have enough tummy fat to make even 2 A cup boobs so that option is out.

The plan right now is to do implants with a mesh hammock-like support against the remaining muscle of my chest. Both nipple and areola complexes will be gone. Hell if I know if they'll tattoo or reconstruct nipples. I was too in shock to even ask the plastic surgeon. What we do know is that the left side skin cannot be saved long enough until I recover from chemo to create a nipple for either breast (nipple construction is usually at the end of the road).

I say get it gone. I'm tired of worrying.

I'm going to get my hair colored next week, one more time. I'm also giving my dear hairdresser the honor of cutting off 10 inches of hair. She's had to color this mess for so many years, she deserves the honor. Sad part is that 10 inches is about 1/3 of my hair length. My little one likes to fiddle with my hair when she's tired so I'm gonna try to do this in stages tso ease her away from her security blanket.

Little and big decisions...way too many at one time.

Oncologist Today

One of the hardest things about having breast cancer is that important life decisions have to made when you're under extreme duress. Forget having a chance to think about it. The clock is ticking - there's a time bomb inside you. Waiting or even analyzing your decisions isn't really an option.

I'd love nothing better than to evaluate more than one doctor for each thing involved with my treatment. I'm not certain I'll have time. My choices aren't really choices. It's born of panic and fear. Not a great basis to make informed and rational decisions.

We see the oncologist today. I want to know this man before I hit the table. I'm well aware that this isn't necessary but I want him to act as my second opinion. I certainly don't feel that I'll be able to make great decisions in the month after surgery, when I'm in pain and stressed even more than now.

He's the same Doctor that treated my mother, knows Steffie (she went to some of Mom's treatments), and I think that will be a comfort to her. I can only hope. But one part of me is wondering whether this man is doing the latest and greatest treatments for breast cancer or simply doing the point and choose between chemo and radiation.

I want innovation and personal treatment. I want the very best that they have. If my surgeon has told me that great strides have been made in just the 5 years since my mother was treated, then show me. I'm not interested in being a number on a chart.

We have to cruise down to Bethesda to pick up my films and MRIs before visiting the plastic surgeon later today. Go here, go there, go here - I'm a home body. I just want to be still. I guess I'll be plenty still a few weeks from now during recovery.

An added note about the Breast MRI:

It's important to note that a breast MRI can only be read accurately during the 7th to 10th day after a woman starts her cycle. If not read during this time, there's a chance of a false positive. This little kernel of information isn't well known if you're not a radiologist. That means we women will have exactly 3 days per month to get the most accurate reading from a breast MRI. Wow. Way to have the odds going against you.

More on the plastic surgeon later...

The nuts and bolts of my breast cancer

People keep telling me my type of breast cancer is very treatable. I guess that makes me feel a little better. But not much. It's definitely made my family feel better which is really all I can ask. I know things could be much worse and I'm thankful it's not. However, I still feel I've been dealt a rather crappy set of cards.

Being 40 makes this worse. I guess if I was 39, it would be even more worse. Maybe, who knows.

I'm learning about breast cancer every day, even if I don't want to. See, I'm the Google queen. I Google everything. With breast cancer, I didn't Google it. I was too afraid once I knew what type I had. My brother did it for us, then my husband. Fine with me. I won't be Googling anything about breast cancer any time soon. My ability to be logical and sift through masses of information flew right on the window last Tuesday with my diagnosis.

Anyway, the type of cancer that I have is infiltrating lobular carcinoma and ductal carinoma in situ. It's stage 1, but it's still breast cancer so it needs to be dealt with aggressively to prevent it from recurring in the future.

MRI's are used to help investigate the possibility that the cancer may have moved to the other breast. I had an MRI on Friday and thankfully, the left breast came back clear. What I didn't know, and what is the most important part of this post, is that many types of breast changes are NOT visible with mammograms or sonograms. MRI's tend to pick up texture changes that can be indicators of cell activity, which is what happened in my case.

The game plan is this: remove the right breast entirely. Mastectomy with a reconstruction. I will lose the entire nipple and areola because the lump was behind the nipple. Who the hell knows what I'll have in it's place when this is finished. I have no idea what reconstruction will entail, although we go to visit the plastic surgeon on Tuesday (as well as the oncologist).

I'm on an emotional roller coaster. I guess the depression part of this is starting to hit - I'm don't know. I feel sad all the time, with pockets of neutral at times. My kids still make me laugh, I guess that's good.

I have this very secret hope that chemo won't come in the normal form. I'm praying that because I do have Stage 1, I'll be treated with Tamoxifen. I don't want to me under the weather from surgery and chemo for months. I want to go back to being Steffie and Jackie's mom, taking care of my family, as fast as possible.