October 2009

Let's pretend the leaves are still falling and the weather is still beautiful. Let's pretend it's late October. OK?

Apparently, that is where I left off here at my long neglected blog. Where have I been? I've been insanely busy. I've been covering a maternity leave for another OB and I've appeared in DanceVision's The Nutcracker (along with Rachel and 60 or 70 of her closest friends). There have been very few moments to spare. I'm taking advantage of a few hours of downtime to clean up my computer's hard drive, which includes printing photos and burning CDs to get said photos off said hard drive.

So, without further ado, I bring you Halloween.

The first photo is Rachel and Katie, who played the role of Toto. She was such a good girl... both Rachel and Katie! Katie is a friend's pet. She stayed calmly in the basket throughout the evening. The remainder of the photos are from our annual Halloween photo shoot. Most were taken on the D+R Canal. Others were taken at the Plainsboro Preserve.

An article for Pinktober

Not just any article, but one written by the very talented Pamela Grossman for Weight Watchers on-line. If you click, you may see a familiar occassional blogger quoted. :)

http://www.weightwatchers.com/util/art/index_art.aspx?tabnum=1&art_id=78701

Zometa Round 3

I think the further I move away from Cancerville, the more I forget I even have this blog.

I had my third round of Zometa recently. I have previous entries comparing a Zometa infusion to being run over by a truck. Flu-like symptoms just sounds so benign compared to the actual experience of said symptoms! So, it was not without trepidation that I approached this round.

The day did not start well. We have an industrial sized bottle of acetominophen in our house. For whatever reason, it could not be found. No where. Not in any medicine cabinet. Not in any place where medications end up when they don't get put away. This was bad news because I had been advised specifically to pre-medicate with acetominophen and then take it round the clock.

Then, we arrive at the oncologist's office, only to realize I had left my Zometa at home in the kitchen. My attempt at being early for my appointment (in hopes of being finished early) was a failure. After driving home and back yet again, I ended up appearing 15 minutes late for my appointment.

The morning continued a downward trend. I had people insisting on drawing my blood, something that had been done less than 2 weeks prior so that it wouldn't have to be done this day. I know I annoyed everyone by refusing the bloodwork. That is, everyone but my oncologist who agreed with me. :D

Finally, we make our way to the infusion room. I'm given a warm pack for my arm, the one with the lesser amount of missing in action lymph nodes. I ask for Tylenol, knowing they keep that sort of thing around. The infusion goes well, as always. I never have any symptoms during the infusion. The problem arises 12 hrs later when I am hit by shaking chills so severe that I can't sleep. Anyway, once it's all over, I ask again for Tylenol. The nurse practitioner says she'll give it to me if I tell her why. I explain and she says "You should have told me before. The secret is Benadryl. We would have given you IV Benadryl first." So instead, she gets me the Tylenol and a few tablets of Benadryl along with instructions to take both around the clock.

Lo and behold, t'was the most amazing thing! No shakes. No chills. No myalgias (muscle pain). I admit I did have some minimal bone pain, but nothing one would need a narcotic for. Just mild, run of the mill pain. It was the easiest round of Zometa ever! At least for me. :) And that's a good thing.

I mention all this because on all the message boards and all the blogs that I read prior to starting to Zometa, I had never seen this little hint for people with similar symptoms. I knew about acetominophen, but that was it... and that certainly did not do the trick by itself.

Lots more fun stuff coming up... really fun stuff, not medical stuff! I have tickets to see the Martha Stewart show for the breast cancer episode, I am having photos done of ME (more on that eventually), and I have a tiny bit part in the Nutcracker this year (I know, no tiny parts, just tiny dancers). More eventually...

Homeschool Science 101

The adventure continues.

One of my hesitations with homeschooling/on-line schooling was science. I felt that Rachel had several years of wonderful science courses at RPS. Her first few on-line science lessons just did not seem as rigorous as what she had become accustomed to. She has been taking it up a notch or two or more on her own and with the help of her teacher. Still, there are days when she sits down at the computer and expects to be able to fly through at least some of the material.

And then she hit her first roadblock! This happened last one day last week. She thought she could sit down and just quickly finish the week's worth of environmental science. A few minutes later, I hear myself paged. "MOM!!! MOM!!! I CAN'T FINISH THIS!!!"

So, I head downstairs to the schoolroom to see what all the excitement is.

Poor child. She has to do an experiment. Said experiment will actually take a few weeks to complete.

I admit she did have other choices. She could have chosen to write a paper. But where's the fun in that?

Instead, we spend a few days gathering the materials and drinking soda so we could finish gathering the materials! We needed 6 soda bottles. Not easy to do in a house of 3! The remainder of the materials where easy to find- water from the canal, leaves from the poplar tree out front, grass clippings, newspaper and kitchen scraps. Yup. We've got two composters hanging out a corner of the kitchen.

So, now the playroom has become the schoolroom and the kitchen has become the science lab.

What's next?

Back to paper and paste

Well, not really paste. I prefer less messy adhesives these days.

I need to convert my so-called scraproom back into a so-called guest room very shortly for a friend's visit next week. Of course, nothing ever inspires me as much as a clean work space.. and perhaps knowing that I shouldn't be making it messy!

Definitely the latter.

The arrival of new papercrafting related product also does a lot for inspiration. I received a wonderful box from Scribble Scrabble last week containing three new lines. With all this inspiration, I've been sneaking into the scrap room in spare moments and ended up with these creations (and a few more I can't shre quite yet). Unlike most of the previous releases, two of the lines are themed, a birthday line and a Halloween line. I admit that I normally avoid purchasing themed papers, but that is changing. Unlike themed papers I've tried to use in the past, these lines were so much fun and sooo very easy to use! The third line is called Lullaby of Birdland and is incredibly versatile. That's the one I used on the school layout and the piccolo layout... and I still haven't gotten into the leafy greens and the reds in this line yet... but hope to soon.

A New Journey

As of August 1, we have begun a new journey.

Rachel has started 7th grade in a brave new world. A world without dress codes. A world without finite deadlines. A world without homework!

Rachel has become a homeschooler.

There are so many reasons why we have decided to try this route. Nevertheless, it was very hard to leave her previous school. She started there as a 3 yr old in the pre-K program. We had thought that she would graduate as a member of the class of 2015. But, we did not just leave the school, we have left the conventional concept of school.

Technically, she is a distance learner. We've enrolled her in a fully accredited distance learning program aka an on-line school. She can work at her own pace, on her own time, at her own level. The flexibility is already a greater gift than we ever imagined. It's not just the flexibility of when she does her schoolwork and how much she does at a sitting, it's also the flexibility of the curriculum to suit her needs specifically. We are still working out the kinks and the specifics, but it is still early in the game. She is taking a traditional mix of courses- English, History, Math, Science, Health/PE (ballet), and French. But, what she would have difficulty getting in a traditional school environment is the variety of grade levels. She's taking a mixture of 7th, 8th and high school level courses. We've been making changes as we go.. she's been taking assessments and trying out courses, moving up a few levels (Math, Science, History) and down (French) as need be. I suspect we are reaching the end of the tinkering and she should be settled into her coursework for each subject by the end of the week, next week at the latest.

I should also add that it was Rachel's idea to start school this early, instead of waiting for the traditional September. Yet another illustration of the flexibility.

Note: The scrapbook page at the top of the entry uses a small fraction of the many patterned papers in Scribble Scrabble's very recently released "Lullaby of Birdland" line. More scrapbook pages to follow in a later entry. :D

A Tale for Tuesday

So, I am having a quiet day at home, finishing up a few projects, when the phone rings.

As I often do, I look at the caller ID before answering.

I see it is my internist's office calling. Odd as I don't have an appointment until September, but perhaps there's been a schedule change.

I answer and hear "Dr. Ackerman? We're calling because your insurance company notified us you did not have a colonoscopy this year."

Interesting.

Knowing that I am not quite the age for a routine colonoscopy but also knowing that my internist has been encouraging me to have one anyway (a result of my ever so wonderful family history and the fact that there are certain cancers that breast cancer survivors have a higher than average risk of developing.. not exactly fair, huh?), I begin to question the gal on the other end of the phone.

Before I get too far she says "Oh did I say colonoscopy? I meant mammogram. Your insurance company notified us that you have not had one this year and we are just reminding you."

Oh really? You are reminding ME to have a mammogram?

Can you see where this is going?

Without the slightest hint of sarcasm, anger or even humor, and without even thinking, I quickly respond "I haven't had a mammogram because I don't have breasts." (Silicone implants, pectoral muscles and skin are not actually breasts).

I think everyone in a 5 mile radius heard her gasp.

I matter of factly continue, "It's been almost 3 years since I had my bilateral mastectomy so I haven't had a mammogram since then."

Poor thing on the other end was babbling her apologies... and I kept talking! I did recommend they remind the insurance company so they don't count me on the lists of those not compliant with these sorts of things (it's one of the ways they rate doctors.. what percentage of your patients have had the routine screening tests they should have). The gal on the other end was still busy apologizing.

Must admit I had a good giggle when I got off the phone.

Maybe I should have just made an appointment just to see what would happen. :P

When it's time to change...

After 3 years, I finally decided to update my profile photo.

What you've seen on every previous visit to my blog was a photo taken in 2006, not long before I was diagnosed with breast cancer. Not that it was perfectly straight hair, but it was ever so much straighter than it is today. I've held on to that photo for far too long. It was understandable when I had no hair and even understandable as it grew back. I've gone from tight post-chemo curls to looser, more moderate curls and that's just where it is staying. That previous profile photo has not looked like me for a very long time.

(And of course, if you are reading this from Facebook.. you have no idea what I'm talking about because I've actually kept those photos slightly more up to date.)

Random Round-Up

Where to start? I'm such a neglectful blogger these days. Ahh.. yes.. for those reading my "notes" on Facebook, it all actually comes from my blog at www.melissaga.blogspot.com

I suppose as I began this endeavor to share my so called "cancer journey," I should start with that report. As always, earlier this month, I received the A-OK from my breast surgeon. That means no scheduled poking and prodding until September.

On other fronts, Rachel is out of school. And when I say out of school, I mean it! She finished 6th grade in the private school that she has attended from the ripe old age of 3. The school is for preK-12, but Rachel will no longer be attending. As of this month, she is a homeschooler. She won't officially begin until August, after her ballet summer intensive program is complete. We've chosen to start with what is actually an on-line school, complete with teachers (as opposed to what people typically think of for homeschooling, with Mommy as the main instructor). It will certainly be an adventure!

Last year, I had a few entries on my return to the bar... the ballet barre that is! That has continued. I'm still taking anywhere from two to four 90 minute to 2 hr classes each week. On the non-ballet days, I usually slip in a 60 minute BalletPhysique class. The latter is not dance at all. It's a whole body fitness class and definitely the most intense hour of cardio I've ever done in my life! While I cannot brag about a large weight loss, I can brag about losing inches. I'm a good 4 inches smaller in diameter, pretty much everywhere. I'm now very deep back into the single digit sizes. And even bigger news, my lipids (cholesterol and triglycerides) were completely normal for the first time in ages.. since my ovaries were removed nearly 3 years ago. :D

Back to the reason I brought ballet up in the first place. I once again faced fear head on and did something I NEVER imagined I would do again in this lifetime. On May 31, I threw caution to the wind and not only appeared on stage again for the first time in over 20 years, I did so in a leotard and tights (and a cute black skirt)! I know what the next question is. And the answer is NO! There are no photos. No, there is no video. Well, I suppose that someone somewhere might have photographic evidence, but I do not. I am actually quite positive that such evidence exists as I could hear someone snapping pictures with an SLR camera. But, I don't have them and have no idea if I ever will. Seriously. Honestly. I don't even have a photo of Rachel in either of her numbers (ballet and jazz).

On the scrapbooking front, I was fortunate to be a guest designer for a wonderful little kit club, Scrapperie, back in May. The kit was called "Spring into Summer" and was obviously very summery. I always like to do something a little unexpected, hence the birthday page and the fall page below. I have to admit that as much as I loved working with the bright summer colors, my favorite layout of the bunch is "Serenity." The papers in this one are all from Sassafrass Lass. My scrapper friends out there may be surprised because this layout just does not look like typical Sassafrass Lass at all. It's also proof that I actually do use my sewing machine now and then. :) It feels like I rarely do any scrapbooking at all these days. It's like school.. I seem to need a deadline to get anything done!

At the rate I'm going, this will be it until July or August. And that's OK. It's a good thing, right Martha?

I missed it.

It completely passed me by.

There were little reminders that it was coming.

Then the day came and went, and I did not realize it for several days... maybe even a few weeks.

What did I miss?

I missed my cancerversary. On May 1, it was exactly 3 years from the day when I first heard those words "It is cancer." Granted, I already knew it was cancer for several days beforehand. If you are familiar with my story, you may remember that I read my own films. When some people hear that, they say things like "you shouldn't have looked" or "how could that be?" Unfortunately, with my background, seeing a film like mine hanging on the lightbox (or on the computer screen) is no different than anyone seeing the sky and knowing it is blue.

I suppose what is important is the moral of the story. I missed recognizing the date because I was too busy living my life. It was a Friday. I took Rachel to school, went to an exercise class, came home, showered, had lunch, made Rachel a smoothie, picked her up from school, took her to ballet class, left the studio 2 hrs later and drove an hour in a torrential downpour to catch a friend in a play. I take this as a good sign. I can't say I have moved on. I'm not sure you ever get to move on completely, especially when you take medication daily, visit your friendly neighborhood oncology-related medical professionals every 3 months, and of course, live with the permanent body changes. But I can say that there are many more days like May 1 when my own cancer history barely even registers on my mind, if at all.

And that, my dears, is my own happy thought for the day. No.. make that the month. :)

Zometa, Round 2

Yesterday was my 6th month oncology check up and my second Zometa infusion.

Zometa is one of a class of up and coming drugs. These drugs are bisphosphonates, originally designed to strengthen bones. It turns out they do much more. The data is growing everyday, indicating that that these drugs are very helpful in preventing metastatic cancer. No one dies from breast cancer that is isolated to the breast. It's when the cancer spreads to other parts of the body (metastatic) that the disease becomes deadly.

When I first asked about getting Zometa, I had read that side effects generally occured with the first dose. Then, as time went on, I started hearing that the side effects got better each time. What side effects? For me, it's flu-like symptoms- shaking chills, aches and pains. I did everything recommended, hoping to skip the side effects this go round. I took Tylenol before the infusion and round the clock afterwards. I took Benadryl to help me sleep (was hoping to sleep through any side effects!). No luck in skipping this constellation of side effects. :( But, I am happy to report it's not nearly as bad as with the first dose. I still had shaking chills last night and I am feeling like I was run over by a truck. But, last time, it was a tractor trailer that ran me over, this time, it's just a small truck or SUV. I figure next time, it will just be like getting run over by a car.

Just wanted to share this as more and more women will be getting these drugs for the same purpose. I suspect that this will become standard treatment within a few short years... my oncologist thinks a recommendation may be coming as early as this May. Kind of exciting!

Bad Scrapbook Blogger

That's me.

I just realized I never shared the rest of my samples from Scribble Scrabble's other 2 lines.

Seriously folks (scrapper friends that is), these papers are so easy to use, they practically scrap themselves!

The first two are use papers and die cuts from Ruth's Collection. The frst one happens to be Rachel's resume photo from last summer. The second layout is from Sept 2006, when Rachel got her first pair of demi-pointes. Now imagine this scene.. these photos were taken maybe a week after my surgeries in Sept 2006. Rachel was begging for photos.. so she got me my camera and I sat on the couch and did my best. Had I been well, they would have been much better lit! LOL. Always a critic.

These two are from Carmen's Collection. The first layout is Rachel putting on her own make-up, including mascara, in the green room before a performance. The journaling talks about how this is just another sign that she is growing up so fast! The second layout is me with fellow YSC-er, Steph (not be to confused with Stef , a YSC lurker). The journaling is hidden in the little key envelope in the upper right.

High Anxiety

I thought I was bigger than this. Bigger and braver.

But, still, every once in a while, cancer slaps me in the face when I least expect it.

I expect it when I visit my young survivor message board. I expect it when I learn that we've lost yet another member (RIP Amanda) or learn that someone else has had disease progression.

I expect it as I approach my every 3 month series of medical appointments. That series is approaching rapidly. In the course of less than 2 weeks, I see my medical oncologist for a "routine" check up, I get a an infusion of Zometa to prevent bone mets, I see my internist and I will visit a new-to-me cardiologist. That makes me a little anxious. I prefer to see doctors I know personally. I admit I am considering changing the appointment to one of the cardiologists I do know. I also hate filling out the new patient forms. They never leave enough room for my list of surgeries and medical history.

Cardiologist, you ask? Why am I adding YET another doctor to my list?? The answer is two-fold (three fold, if count that my internist has been insisting on it for 2 years and I've been ignoring her). One is that some chemo drugs can be quite toxic to the heart. The other, more pressing reason is that my mother had her first MI at 51, not too deep into menopause. I am in menopause, thanks to removal of my ovaries, and I have inherited some of her other issues as well. In the "pro" column is the fact that unlike mom, I have never been a smoker, and I exercise regularly.

That brings me to the next source of recent anxiety. I added yet another exercise class to my weekly routine this week. I started taking Zumba, a Latin dance based exercise class. Think fast paced Latin music coupled with aerobic dance heavily infused with moves from salsa, mambo, chacha, etc. It's not quite what I am used to. The warm-up is not exactly what I'd call a warm-up. It is fun, though.

But that's not what caught me surprise.

It was the locker room. (cue deep dark music)

I have been taking ballet classes for a year now. I do change my clothes in a locker room on a regular basis. I don't know why this was suddenly such a hard thing for me. I didn't expect it. All of a sudden, I was extremely self conscious of the long scars that run from under my arms, across each breast, to the edge of my sternum. I know my scars are fading. I know that I have amazingly realistic tattoos (areolae) that make the scars less prominent in appearance. I bet no one would notice unless they were looking. And who really looks in a crowded locker room? Those facts were no comfort at that moment in time. All of a sudden, I was reminded that I am still considered a breast cancer patient and will, for all intents and purposes, no matter what my disease status, will always still be a breast cancer patient. I can't hide from that when I am naked in a group of strangers.

And now for something completely different....

It's that time of year again. The time of year that makes the hearts of addicted.. I mean... um... dedicated crafters sing "cha, cha, cha!" For my confused friends out there, CHA is actually the Craft and Hobby Association trade show. It's where all the new items that will appear in stores over the following months will be sold to retailers. The show begins shortly in Anaheim.

And once again, for the confused who are wondering why a cancer-surviving ob/gyn even knows about this show, let alone is talking about this show on her blog (BTW, she has even been to said show in the past), I will explain. Papercrafting, especially scrapbooking, is my hobby. Somehow, over the years, it became more than a hobby. I've dabbled on the sidelines of the industry for almost 10 yrs with publications in books and magazines and even teaching classes at stores and conventions. I don't do too much of that these days, but I do still create. I am very fortunate to be on the design team for a small Utah based company, Scribble Scrabble, who will be at the show.

So, without further ado, I present a sneek peak at Evelyn's Collection, one of three new lines.

Update

As these entries now automatically post to Facebook, which seems to be taking over for blogging for many, including myself, I thought it was time for a small update.

Unfortunately, my sister has had a rather eventful recovery from her bilateral mastectomy. There have been issues with healing. Yesterday, her incisions opened down to the layer of the actual tissue expanders. She underwent an unexpected surgery and had them removed. Essentially, on some levels, this is like having yet another bilateral mastectomy. She already had 600 cc in those expanders. My implants are 650 cc, so she was already at a decent size. But, now she's back to step 0.

She's actually doing very well despite this setback. Reconstruction will now have to take a backseat to recovery. Recovery is a long road. I've read many a time that if you've spent a year in treatment/surgery, it takes another year for your life to return to normal... the new normal. We certainly know by now that the old normal is dead and buried.

Nursing Care for Bilateral Mastectomy/Tissue Expander Patients

I am incredibly annoyed that I feel the need to address this.

My sister called and gave me her report from the evening and this morning.

I do remember what it was like. However, like childbirth, we tend to put the worst parts back into the deep recesses of our minds.

I had forgotten what it's like to not sleep well because the PCA button needs to be pressed every so often for pain control. She reminded me.

I did remember how hard it is not to be able to do simple things for yourself. How you can't change the channel on the TV set or even turn it off unless someone leaves it very close by. You can't reach for the phone to answer it. It has to be right there. She still reminded me.

I had forgotten that even though someone delivers your breakfast on a tray that unless someone helps you get it set up and gets you up to eat, it doesn't matter that it was delivered to you. You can't eat until someone helps you. She reminded me.

I had forgotten what it is like to wait all morning for someone to help wash you up. Help may be an exaggeration. You need someone to wash you. There's little you can do yourself. I will be explicit and add that wiping yourself in the bathroom is one of the most difficult chores you have. Pretty hard to reach that area when you don't have use of your pectoral muscles. No one ever came to help my sister wash up this morning. Her dh had to. She reminded me.

So, the purpose of this entry is not for my handful of regular readers. This entry is for when some young or not so young med-surg or oncology nursing student enters something like "post-op care for bilateral mastectomy patients" into a search engine they will may find this entry and get a clue! Your patients in this situation can barely use their arms at all. Hands, yes. Arms, no. The best nursing care will address this. And I hope to address this with the nursing supervisor later this afternoon myself.

Surgery Day

Today is my sister's bilateral mastectomy (aka "double" mastectomy) and expander placement. I imagine she is out of the OR and in recovery by now. I will be heading over in a little while to see her in person.

Boy, does this stir up memories. It's been just about 2 years and 4 months since I was in the same hospital, with the same surgical team, having the same procedure (and a few more, but who's counting?!) My most vivid memories include waking up with such a strong sense of peace. 2+ years later, I still have that same peace with my decision to go ahead with removing both breasts and ovaries. I hope she has the same peace. I watched her go through the same turmoil in making the decision, not wanting to take any more time off from her life than necessary, not realizing at first that this might be key to continuing the *new* version of life.

The first few weeks after this surgery are tough. You can't do much for your self. I couldn't open the refrigerator, couldn't open a bottle of water and couldn't turn the water in the shower off and on by myself. Driving? It was a good month before I could drive and I admit it was not comfortable doing so at that point. Compounding it all was that I had some major blues and mood swings as I had my ovaries removed on the same day. Perhaps her recovery will be a tad bit easier without having that additional procedure.

Still, even having gone through this not too long ago, it's hard to know how to make it any easier for someone else, especially someone else who was raised to be fiercely independent. Mom was quite successful in that regard!

Just got word that she is in the recovery room.