Following up on yesterday's blog

Richard and I went to MD Anderson today and spoke with my lead oncologist. Between her and her wonderful nurse (who spent a good deal of time with me on the phone yesterday) we now have a clear understanding of the issues involving reconstruction--and me.

Generally speaking, if a woman had breast cancer of the "normal" variety, ie not aggressive, and not metastasized, then when surgery took place, that patient would have the option to get "expanders" to stretch her skin to allow for implants later down the road. If the patient was going to have to face chemo and/or radiation after surgery (as most do--surgery, chemo, radiation, or as in my case--chemo, surgery, radiation) she would have to wait for her skin and tissues to heal from all the procedures to have the final reconstruction, but in the meantime, her skin would be stretching. After healing, with one reconstruction surgery she could go on her merry way, checking in regularly for pet scans showing her body cancer free. Yay!

I applaud the women who get this far and by no means am I minimizing their trials. Their trials are my trials exactly, and they stink. I guess I just thought my story would end the same as what I just described. I could just keep moving down the conveyor belt, taking my medicine, waiting to reach the end of the line when I get to jump off the belt, punch out, and go grab a beer. (Or a very nice, very cold, bottle of champagne.) To go home and only come back once or twice a year for check-ups.

But I'm getting ahead of myself.

During lumpectomies, or mastectomies, the surgeons, of course, try to cut away all cancerous cells and nodes. But there is always the possibility breast cancer will return anyway, if one little malignant cell slips the hangman's noose and goes rogue. Stretchers can pose a problem in discovering these cancerous cells. The cells can hide behind the stretchers, or in some cases the stretchers cause infection, delaying treatment and allowing for cancer cells to grow.

This delay may not be critical for a "normal" acting cancer. In other words, if a woman had surgery, and opted to have stretchers, then found out she had abnormal cells, a delay in finding these cells of a short amount of time--weeks, a month, two, would probably not prove deadly. (Thank you, Lord!) If the cancer (as I understand it) doesn't make it to stage four, there is a plan of action to follow. And most breast cancers shouldn't progress to stage four that fast.

Unfortunately, IBC, the cancer I have, is fast acting.

The nurse kept calling my current diagnosis "locally advanced." And with a "locally advanced" cancer, she said, it is critical to find the new cancer cells immediately after surgery, should they recur.

Me: "Why so critical?"

Nurse: "So we can keep them in the same stage as they began."

Me: "Which is?"

Nurse: "Locally advanced."

Me: "Uh huh. What does that MEAN?!"

She kindly explained a locally advanced cancer means a metatastic cancer, already beyond the first two stages of cancer, but not yet at stage four.

I finally understood. "Locally advanced" equals stage Three a or Three b. (That's where I am now.) And today I got the last piece of the puzzle. Stage four means the initial cancer has metastasized into another part or organ in the body.

So. Putting all the pieces together. Surgery puts the body into hyper-cell-drive as it tries to heal. Hopefully, all cancer cells will be gone-daddy-gone. But if they're not, they are in hyper-cell-drive along with the rest of the body. That's where radiation comes in--to burn the little suckers out of existence.

They'll map out my radiation patterns after my surgery. If I chose to get stretchers, and one of them blocked my mammary lymph nodes where cancer cells could hide if they'd survived the chemo and the surgery, the stretcher would have to be removed. Ug.

Enough already, you say. Forget the #@!% stretcher.

I know. I am. Because...and this is the part Richie and I have decided they didn't really want to tell us, hoping to spare us....if the cancer recurs, and we don't catch it immediately, and it jumps to another part of my body which, with IBC can happen in weeks, there is no cure. Treatment, yes. Cure, no. Chemo. For the rest of my life!

Hell no.

I pray the chemo has worked, and the surgery will be successful. I pray the cancer will not recur. But that is not in my control. The position I place myself in is in my control. I will wait for all reconstruction, as advised, for as long as it takes. Should the cancer recur, something that evidently happens with IBC not infrequently, we'll find it and start this whole crazy process again, and I'll live.

Don't get me wrong. I really think we'll beat it at surgery, or at the very least during radiation. And the good news is, IBC is fast growing, so we'll know pretty soon if we've beaten it. Statistics show, if it doesn't recur in the first couple years, it's gone.

But it's a long road to normal. That's all I'm sayin'. Longer than I'd planned or expected.

I'm sure you can tell I'm a bit bummed. But I don't want to give the impression I'm staring out the window with a comatose look on my face. I'm not. I'm sick, and, thank God, I'm living in an age when there's medical advancement sufficient to tackle my illness. Don't for one second think I'm not grateful for that. And for the fact I did catch this IBC early. And that I have such a loving family and friends who treat me like I'm the most special girl in the world. I sometimes feel guilty I've got it so good. :-)

Someone recently said to me, "There's always someone who's got it worse." (She wasn't lecturing, more like expressing her opinion, and wondering if I felt that way too.) I know this might sound strange, but there are some things in this world that would break me. Really crush me. But what I'm going through now isn't one of those things. It's just life, and I feel God's presence with me every day, filling me with a belief that this is all part of the plan.

Dates to keep in mind:

Feb 3rd--PET scan

Feb 7th--FINAL CHEMO!!!

Great weekend-new uphill battle

Last weekend was "Goldie's weekend." It was a smashing success, save for the fact a few of my angels weren't able to come. On the upside, with only 7 girls sleeping over (Toots and Audra went home to their own beds) everyone had a comfy place to sleep! (At least I hope so. Three were on air mattresses. :-))

We talked and talked, laughed, watched funny music videos (have you seen the one with Justin Timberlake doing the Beyonce video? haha!), and made funny pictures (some of which are now on facebook thanks to naughty Merrilee!) We listened to music, broke bread, and stayed up waaay too late, because no one wanted the night to end. The exodus occurred mostly on Sunday, giving me instant withdrawal :-( But luckily Merrilee stayed with me Sunday night and I didn't have to say goodbye to her till Monday afternoon. Richie softened the blow by coming home from his ski trip. It's funny. Even though I was surrounded by my long lost friends from around the globe, I missed my honey so much. Over the weekend I kept chuckling to myself, picturing dressing him up as one of the angels so he could've stayed! heeheehee.

On Monday I had my 3rd to last chemo! Yay! On Tuesday I met with my surgeon, one of my team of Doctors from MD Anderson. Let me mention here, MD Anderson rocks. The people there are so accommodating and kind. And the promise they make to have a team of doctors who discuss your case weekly sure sounds good. But...in practice, not so much.

The issue on the table is reconstruction. For those of you who don't know, following a clean PET scan showing no cancer has spread in my body, I am going to have a bi-lateral mastectomy. As I understood it, at the time of surgery, the plastic surgeon will be there to close me up, placing two expanders in my chest. You see, the skin has to be stretched to accommodate the implants that will eventually replace the expanders, since so much skin will be taken during the surgery--especially in cases of Inflammatory breast cancer (IBC) where the cancer has invaded the breast skin. The expanders are slowly inflated. It has to be like this. if the skin is stretched too quickly, it dies and never comes back. (Picture Michael Jackson's nose--or the hole where his nose used to be)

OK, so surgery, expanders, then radiation then reconstruction.

Radiation lasts 6 and a half weeks. It damages the skin, delaying the final reconstruction by 6 to 9 months , and in some cases, all the way up to a year, as time is given for the skin to heal.

The way I understood it, this was protocol. Only last week, my radiologist said something about "bad outcome" of reconstruction with implants. He said tissue replacement works better in cases with IBC. Huh? First I heard about this. I kind of dismissed it, too, because, although I wouldn't mind my belly fat being moved--hell, throw it away!--I don't want muscles cut from my stomach and back to create a new pocket. Great, so now I have breasts, but no abs, and meanwhile I'm going to be dealing with rehabbing my arm where they'll take out lymph nodes--at least 12 as I understand it. Will I ever be a functional human being again?

Ok, so then I talked to my head oncologist. For the first time, she tells me her opinion. No stretchers at all till a year has gone by following radiation. Say what? Yes, she says, she doesn't want anything in me that will inhibit her ability to spot any recurrent cancer growth along my chest wall.

Yesterday, I spoke to my oncological surgeon. She rather poo-pooed the idea I should wait to have the stretchers put in. She says the expanders may actually make it easier to spot recurrent cancer.

I scratch my fuzzy head. Doc 1 says no stretchers for a year. Doc 2 says tissue replacement instead of implants. Doc 3 says implants and go ahead with the expanders at the time of mastectomy.

My thoughts? I really don't want three surgeries instead of two. If they put the stretchers in during the mastectomy, that's one less time they have to cut me open, because those expanders have to go in and do their work prior to inserting actual implants. I also don't want to wait a whole year to start looking normal to myself and to move away from this freakin business of being sick.

Still, if I have to I will. But how do I know what is best if my "team"--every one of them!--is giving me conflicting advice? I'm really upset. This is a big decision and I want to have an opinion, not just a preference.

I have made an appointment to speak to my oncologist to address this issue of the team not being in agreement on the subject of reconstruction.

I'm sorry to be so graphic. I don't really relish discussing my new and improved breasts on the web, I assure you! But I felt I should so that I could pass on what I learn. It is my hope that someone in the future who has to deal with IBC will be able to use my experience as a reference, because I couldn't find any answers on the web and I looked.

One good thing came from looking. I found a website called eraseibc.com. The site has made several videos detailing the nuances of IBC. The latest video is really good, interesting and informative. I'm posting the link below. Richard and I highly recommend viewing it for your own edification, as it may save the life of someone you know. Please pass the video on. The key to surviving this highly aggressive cancer is early detection. (By the way--I am among those who detected early)

http://vimeo.com/15550223

I'll post again after my meeting tomorrow.

Seven degrees of separation

A few years ago, I was introduced to the notion of "seven degrees of separation" by a couple of my very good friends (Michelle and Shawn). Since then, I've heard different variations on this--five degrees, etc. The basic premise is that, at any given time, all people are separated from knowing each other by more or less seven people.

Why am I bringing this up? Rambling thoughts. :-)

Seriously, though, it came to my mind because of a little lunch date I had yesterday, set up by my very good friend Kim Bignon. She is a wonderful, positive, energetic, person, who is friends with tons of people, I suspect because she never met a person who didn't love her, probably because she is also one of those people who knows how to be a really good friend.

She told me at the start of my cancer trials about her friend, Punky, who had, and beat, breast cancer. Punky made a bunch of shirts that read, "More than a Conquerer," and have the pink ribbon emblazoned on the back. She found out Kim B had not one, but three friends in Orlando fighting the good fight, and she sent us all a shirt.

Yesterday, Kim B gathered me, and the two other gals who got Punky's shirt together for lunch. date she named "Bosom Buddies."

My new Bosom Buddies are Amy, a beautiful wife and mother of three, currently with a head of curly black hair and one year cancer free, and Shari, also a wife and mother of two. She's had her surgery, and just finished chemo. Next she'll begin radiation. She and I both showed our heads briefly, and we both have a layer of fuzz, akin to a tennis ball or a baby chick, depending on your level of creativity!

Lord, I hope she won't mind my sharing this, but she got a little troubling news right before lunch. I don't know the exact details, only that a few abnormal cells were found on her breast (again, this is post surgery and chemo) and now she must go in for an MRI. Ever since I heard this, she has been on my heart. Prayer warriors who have been so good to me, I humbly place at your feet this request: Please stop what you're doing right now, stop reading, and say a prayer for complete healing for Shari and continued good health for Amy.

Thank you for doing that.

OK, so the degrees of separation thing. From the thoughts of my new bosom buddies sprang thoughts of just how many people are, or have been, affected by cancer. (forgive me if some of the names are unfamiliar to you, just know that if you don't know them, it's only by a separation of one person--me!) My mom, my grand mom, Danna (way in the past, thank God, and not breast), Aimee Nocero-Lewis's mom. Kimmy, a lovely accountant n Richard's office, just learned her brother-in-law, a recent emmigre into the country has brain cancer and approximately two years to live. Dr. Hunter, Northland's head pastor, recently lost his grand daughter to cancer. My mom's boss's wife, Sarah, is fighting cancer, and her boss, Mike, already beat melanoma (I think that's what he had) and my OAD also fought this. Paul lost his mother to lung cancer. Becca lost grandma Faye. Pam's partner's husband has leukemia.

Sorry this is such a loosey-goosey blog. I'm just feeling like I want to get the whole world together, like in the old Coke commercial, to hold hands and sing to the heavens for a cure for this disease, and for comfort for those the disease ravages in its wake (spouses, children, friends).

Jeese. In this world, you never know what's next. You never know who will get sick, who will get run over (Kim B!!!), or whatever else may separate us. A lot of times people think about their bucket lists. What they want to do before they die. I'm asking you to think about what you want to do with others before they die. I'm not trying to be maudlin! I swear I have a point! :-) I'm saying live you life normally, yes. Go to work. Go to the gym. Read a book, take vacation, garden. Just make sure in the midst of it all you find time to love the ones you're with. I'm convinced that memories of not being good to your loved ones, or even strangers, is a way worse regret to have than never having jumped from an airplane or seen the Taj Mahal (sp?) or made a million bucks, or blah blah blah.

I'm also convinced no one ever regretted loving well. I hope I never forget this lesson. I hope you don't mind my mental cogitation on the subject (then again, if you did, you probably stopped reading long before now :-)) That said, allow me to say just one thing more concerning love. Go for it!

Today was the 8th of 12 taxol treatments and we also met with Dr. Shah.  Her impression remains that Kimberly is responding well to the treatments. We had lots of questions today about side effects and also the path ahead.  K is having a lot of itching, fatigue and a bit of clumsiness.  No, she wasn't already clumsy!  The taxol or pre-meds are notorious for all of this but none is fun.  The itching causes restless leg and sometimes keeps K up at night.  Last treatment they increased the benedryl pre-med, which is given to reduce/prevent allergic reaction to the taxol, to reduce the itching.  After talking with Dr. Shah today, we agreed the benedryl may in part be the cause of the itching and not the cure so they went back to the regular dose and added adavan.  With so many issues, treatments, drugs, side effects and doctors, it is essential that we constantly communicate thoroughly about everything.  

We learned some interesting things today.  We talk regularly about certain symptoms (numb/tingling fingers, clumsiness beyond occasional stuff) that can indicate that the taxol is reaching a toxic level in your body.  They want it high enough to kill the cancer but not high enough to damage your nervous system.  If you show signs of toxicity, they reduce your dosage or delay treatment.  Of course, I would think most people would not want either of these to happen; you want the drug working, doing it's job killing cancer cells.  Turns out that studies show that if you become toxic, a lessor dosage works the same for you as the higher dosage does on someone else.  I guess if you are less tolerant of the taxol, so is the cancer.

We are getting a better understanding of what is coming and the order of things.  We will be scheduling a PET scan that will be done just before the last taxol treatment.  The PET scan, which requires that they inject a tracer, creates a 3D image of the body that allows doctors to identify cancer cells.  Kimberly had one at the start of all of this to confirm the cancer had not spread.  Now the test is to confirm the clinical opinion that the cancer presence has been reduced.

We discussed surgery, radiation and reconstruction.  We have 4 weekly treatments to go and a PET scan concurrently.  3-4 weeks after the last taxol treatment K will have surgery.  3-4 weeks after surgery, she will start daily radiation treatments that last 6.5 weeks.  Reconstruction won't be possible until well down the road, perhaps a year after surgery.

It's not easy, but K is doing well.  Dr. Shah is also very positive and she always stays until we have no more questions.  I think lately we leave feeling a bit better.

It's hard to watch someone you love go through this.  I've been dragging my behind through the days the last few weeks.  Just worn out.  And who was there to pick me up?  My wonderful wife.  :)