A rough couple of days

Michele isn't feeling great. She doesn't really feel up to blogging but I wanted to keep all of you informed on her progress. The last couple of days have been filled with fever and queasiness. Her healing is right on schedule. I changed her dressing today and everything looked great. She's a bit emotionally discouraged though.

I need your help. I've been trying to make her laugh but apparently she doesn't find me funny right now. That may not bode well for all of you (because I am very funny) but any attempts at humor on your part would be greatly appreciated.

Whatcha got???

Two Wolves and a Lincoln Continental

By now it’s probably clear that I’m a fan of the metaphor. It can be annoying, I know, but it’s how I often make sense of things.

Last night I had a dream that I was walking on a snow covered path in the rural area I used to live. Two small grey wolves had picked up my scent and were pacing me. When I turned to them, they lunged. The teeth of one wolf grazed my neck. I reached out for both of them with my hands and they bit onto me. We clamped onto each other and wrestled in the snow. I didn’t want to kill them, but I knew they would kill me if I didn’t. So I bit back. And I killed them.

Wow, how obvious was that?

This is clearly me worrying that my two miniature pinchers are going to walk all over my chest. Heh. Heh.

I can’t write too much right now, but suffice it to say there is much to discuss. Cheryl was overjoyed by the results we got from the pathology report. For me it was like nearly being hit by a car. I’m not quite ready to celebrate because I can still see the taillights. Guess I need to catch my breath. Let my heartbeat return to normal.

I’ll be back soon.

Home

Michele came home today. It was a stressful day with many highs and lows. When we received the pathology report we were both floored. It confirmed that she really dodged a speeding bullet. I will let her explain more when she feels up to posting but long story short, both of her breasts were filled with two different types of cells that are known to develop into breast cancer. Had they not found the second cancer and had Michele opted for a lumpectomy, the nurse predicted she would have developed another cancer in the next twelve months. I feel very lucky. Catching that second very hard to find cancer put into motion decisions that likely saved Michele's life. Lots to think about and be thankful for.

Recovery

Michele has mentioned the irony of walking into the hospital feeling healthy to get a life saving treatment that makes you feel awful. She went from easily speeding through her 16 mile bike loop to finding a walk to the nurses station exhausting. She's having a good day, feeling the pain but staying on top of it. She's tired, but feeling positive and appreciative that the cancer was caught before it reached her lymph nodes. Cam and Mads visited today. They entertained the masses by asking tough questions about her surgery in the honest way that only a five year old can.

Good News

Michele is still in surgery but I just spoke to her surgeon. They took out two sentinel lymph nodes and both looked clear. We will have full results on Friday but she said that doesn't tend to change. This means they did not remove the rest of her lymph nodes (one of her biggest fears), no radiation (another big fear) and the cancer does not look like it spread to other areas of her body (the third big fear).

Cancer sucks, double mastectomies suck. There is much comfort in knowing things don't suck as much as they could!

Happy Juice

The surgery is underway. It is going to be longer than we expected, probably four to five hours. Michele was very tense but she did manage to find humor in the fact that she will come out of the surgery blue. Apparently not a very attractive shade of blue from the dye they use to test her lymph nodes.

Michele is a happy and unusually positive person. The drugs they give her seem to really magnify that. When I took her home from having her wisdom teeth pulled, I found her in the recovery area with two thumbs in the air and a big drooly smile telling the dental assistant what a great time it had been. On the way home after her knee surgery she decided she was thinking Arbys. I can't stress enough what a huge mistake that was. I got a glimpse of that nuttiness before they took her to the operating room. We are counting on all of you to help make sure she is laughing (and making us laugh) soon!

Hold Back the Rain

Feels like there’s a storm on the other side of this day. Gotta let go of Cheryl’s hand and walk into it. I’m not too proud to admit this “warrior” is oscillating between resignation and terror at the hours, weeks and months ahead.

A team of doctors will soon take the first (and most important) action to save me. You can’t get out of such an experience without being humbled to your core. We are all brought low in so many ways.

Whatever strength I have to rise up again comes from a sense of love and connection to a family, a community and a world that I’m not ready to leave. A million thanks to everyone for the thoughtful calls, emails and comments.

Let’s do this.

In Sickness and In Health

My rock through all this is of course Cheryl. She’s been at every appointment since that first biopsy. There is a definite upside to co-dependency.

The downsides are times like that first weekend after the diagnosis—two cold, rainy days of us contemplating the end of all we’ve built together and our poor kids. What a wonderful reprieve it was the following Monday when we discovered that my lymph nodes appeared to be in pretty good shape. And that my cancer was driven by estrogen and therefore more controllable.

Cheryl and I have never exchanged vows before a congregation. No white gowns, no flowers, no choice of steak or chicken. DJ or live band? Gift registry at Macy’s or Bloomingdales? Nope. A wedding is certainly a gorgeous and thrilling event. A marriage, however, is a plot between two very stubborn people. It takes years of good times and bad times to make you strong enough to endure the big stuff. I don’t know what I would do without this woman. She’s amazing.

Somewhere in my youth or childhood,
I must have done something good.

(and you know you’re pretty far gone when you’re quoting Rodgers and Hammerstein)

C is for . . . Claudia

Just realized I switch to second person when writing about things I haven’t quite got my head around: “If you want nipples, they will fashion them for you...” And when it’s something I don't want to face without Cheryl it becomes first person plural: “Friday we meet with a plastic surgeon...”

Along those same lines of mini-denial, I let the doctors and staff call me by my first name. They read my chart or insurance card and I never correct them. So it’s Claudia going through this, not Michele.

C is also for coping.

Rummaging Around For Some Grace

Lots of odds and ends. The most important news is my surgery, scheduled for Wednesday. And with that, I must drop all worry about my lymph nodes, the big unknown. Time to let it go.

We visited with the oncologist yesterday and that went well. It was tough to tour the oncology wing of the cancer center still with breasts and hair, and nod to those in various stages of their chemo process. The doctor assured us: my treatment will be specifically geared to my results, history, genetics, etc., not just some boilerplate dosage.

Last night I read a dozen or so survivor stories and they ran the gamut. Everything from women who had a small lump removed with no chemo and a little radiation to women who had suffered for a decade with the most dangerous, aggressive breast cancer. Every story was positive, every woman making the most of her time on earth.

This morning we met with the plastic surgeon and he also assuaged some concerns. I told him that I don’t need to be busty, I just don’t want to be concave. I really hated the idea of repeat visits to be “pumped up.” His eyes lit at the challenge and he told us about an alternative: immediate reconstruction. It will provide me small but presentable breasts and doesn’t require chest expanders or additional surgery. 90% of my decision was ‘the beach factor,’ when passersby might look at me in a swimsuit and balk. I’m reasonably sure my friends and family understand that I don’t need to be a 34D anymore.

This weekend will be about getting things in order—a balance of cleaning, organization and relaxing with my family.

Peace to all.



PROCEDURE: IMMEDIATE RECONSTRUCTION

After the mastectomy, the plastic surgeon opens a pocket behind my pectoral muscle. Instead of inserting expanders, he will sever the muscle and reattach it to tissue called Alloderm to provide immediate expansion. Then he will insert the actual breast implant and sew me up. All done.

So what’s the catch? I won’t be big breasted anymore. And, well, Alloderm, scares people. It is donor tissue that has been cleansed (probably irradiated) of cells that might cause rejection. It actually carries less risk and discomfort than the more popular expansion technique.

Why am I not freaked out by having a stranger’s tissue connected to mine? Because I already have a donor’s achilles tendon (allograft) in my knee. I got over the creep-out factor a couple years ago. In fact, I’m incredibly thankful. My post-op knee works better than it ever did, the muscles on it are noticeably larger than my right.

So. Soon I will be comprised of three people!

Which I will conveniently use to explain mood swings.

Rays of Light

Forgot to mention: My chest x-ray and blood work looked good.

Also, the HER2 results on my primary lump came back negative. If the result had come back as HER2 positive it would indicate a cancer that tends to grow and spread faster.

So those results are looking good.

Baggage

Back from reconvening with my surgeon since yesterday’s news. Looks like a double mastectomy. Paraphrasing her, “Clearly, your breasts want to make cancer, it’s probably just a matter of time before you develop another cancer in one or both.” So the choice has been made for me, it’s no longer a question of possibly sparing my breasts. And, imagine, if I had not had that follow-up ultrasound and biopsy, I would have had a lumpectomy, only to find another cancer in a year’s time.

I’m not quite sure why I’m not collapsed in a blubbering heap yet, like you see on a Lifetime movie. I am certainly frightened of the coming pain. And sad that an identifier of “who Michele is” will soon be gone. I did try to get along with these breasts. Thought we had an understanding: I support you, you don’t get in the way too much. But when they want to kill you—well, that tends to sour the partnership. And so I guess I’m ready to drop that weight from my shoulders.

Tomorrow, a consult with my oncologist to discuss my case. She won’t be staging me or anything, but they know we have a lot of questions and want to get the ball rolling.

Friday, we meet with a plastic surgeon. His schedule has to line-up with the mastectomy surgeon. So we need to heavily lean on him to fit us in. I REALLY want to do this next week; those lymph nodes are always in the back of my mind (the CIA should use this waiting game as a torture technique).

So the latest thing we need to get our heads around is reconstruction. I’m not all that crazy about it, frankly. It just seems so unnecessary in the grand scheme of things. And yet, I feel this enormous pressure from society to at least have some facsimile of breasts, even if they’re just Barbie boobs. It’s seems such a crazy thing to consider when you’re simply trying to stay alive.


RECONSTRUCTION PROCEDURE (warning: graphic)

After the mastectomy, and the check for lymph node involvement (with possible dissection), the plastic surgeon comes to the table and adds two saline-filled bladders behind my pectoral muscles.

Over a few (depending upon desired size) office visits, they inject more saline into the bladders to slowly stretch the pectoral muscles and skin (they will have taken much of my breast skin and nipple, leaving very little excess).

When you reach the desired size, they sedate you again and insert the implants behind the muscle (unlike a natural breast which is fatty on the front side of the muscle). If you want nipples, they can fashion them from your skin and then tattoo on areola.

If I understand correctly, this is where the actress Christina Applegate is at in her cancer journey.

Latest Results

Got the results of yesterday's biopsy ahead of schedule.

It appears I have a whole 'nother kind of cancer. Lobular. Good news is this lump is smaller and less aggressive than my first lump (ductile). Plus it is in the same quadrant, meaning they might both be taken at once in a lumpectomy.

However (there's always a however), lobular cancers tend to develop in both breasts, meaning my right might develop one eventually.

And so I say, ARGH, simply ARGH.

At least the show is on the road now. I meet with the surgeon tomorrow. Oncologist on Thursday. My facilitator, Judy, says I might want to meet with a plastic surgeon. How's that for a subtle hint?

Have mercy.

Also Makes a Handy Pincushion

Had a lovely weekend, taking care of odds and ends, hanging with the peeps, getting strong. We’re in a much better place here at Carbon manor. Cheryl and I are slowly clueing the kids in on what’s ahead. We want them to be able to ask questions but we also don’t want to overwhelm them. They start kindergarten this fall and it needs to be as stress-free as possible. Madeline was concerned kids would make fun of them because of my bald head. It takes you aback at first, their awareness and honesty. But why should we censor that? It's exactly what I would have wondered at her age! Guess they will be shaped by this too, just no getting round it.

My biopsy went fine today. Finally had the guts to look at the device. I was imagining a giant pneumatic staple gun, but it’s really just a hollow needle, larger than normal but probably smaller than an amniocentesis needle (how do those women do it? poor things). The needle is long but they only go in an inch or two. They insert tiny metal markers too, so they can track the lumps. I’ve got four in now. Shrapnel.

Although my breast looks like a battlefield on which we’re firing the opening shots, I feel extremely vital. How lucky am I to have, not only my otherwise good health, but my wonderful friends and family who are working to keep me sane and making me feel loved? Everyone deserves this fringe benefit. I see the women who come to the clinic alone, looking a little rough around the edges and I just want to sit and talk with them. Future calling? We’ll see.

So. Another warm summer day. A few more cuts and bruises. Results on Wednesday.

Meanwhile, Along the Winding Path . . .

Back from the follow-up ultrasound. As they had warned me (many times), the ‘problem’ with an MRI is that it really lights up all manner of concerns. Ultimately this is a good thing because you need to find everything.

My right breast remains clear, which is good if I’m aiming for lumpectomy. My left breast, which already contains the cancer, does have other areas they want to biopsy. But there is still hope. Two very small lumps that they suspect might be cancer are very close to the primary lump, and so they can probably get all that in the lumpectomy. There is an additional lump in another quadrant however, and if that turns out to be cancerous, I’m looking at a definite mastectomy. The radiologist suspects that it is benign but wants to be double sure. So again, there is still hope for a lumpectomy if that’s what I decide.

Monday I will have the three more sets of core biopsies. Wednesday I will find out the results. I also had blood work done today and a chest X-Ray so the results of those should be coming.

I should say too that while all this testing and waiting is agonizing, I don’t have the kind of cancer that requires immediate care. Some women take their month long European vacation before getting treatment. Of course, they are complete lunatics in my opinion, but the doctors do send them off with a smile.

So another weekend without definitives. But as Cheryl just reminded me, all good stories require tension and suspense. So tune in next week for another exciting episode of As The Magnetic Resonance Imager Turns!

Door Number One? Or Door Number Two?

Radiation Therapy consult today at the cancer center. And so finally everything is clear. As mud. Each time I try to sit down to blog, I start going off on a tangent. If it takes several consults to understand this stuff, how could I possibly bottom line it here?

The primary conversation here at Carbon manor is lumpectomy vs. full mastectomy. It’s probably just a distraction from larger fears, but there you have it.

Initially, I was thinking “get them off me yesterday!” but now I’m less certain.

It's true that if I keep my breasts, I’m faced with MRIs every year for the rest of my life. But there is actually no danger in an MRI. My breasts are dense and nearly impossible to read with a physical exam plus mammogram but a MRI with ultrasound is really effective. Plus now I have a baseline. I might even be able to skip the mammograms since they don’t work.

But what are the chances of developing a new breast cancer? Well, because they’ve determined my cancer is estrogen/progesterone fueled, it is pretty ‘good’. Part of my treatment will be to trigger menopause and shut down this rattletrap reproductive system that had nothing better to do than manufacture fibroids on my uterus and gnarly buggers in my breasts and make me a big crank once a month. With that treatment alone I’m already reducing the chance that another one will pop up. So that’s a mark in favor of keeping them.

From what I can discern, you have a mastectomy for two main reasons. Either you have multiple tumors and it’s just easier to take the whole thing. Or you are attempting to prevent future cancers and the anxiety/hassle that comes with it. A mastectomy doesn’t really protect me from the cancer I have now. It’s the lump removal, chemo and radiation that kills the current cancer. When they take a breast, they can’t get every single breast cell and in rare situations, it can return in the form of a rash or bump. Cancer's a real joker.

Mixed up in all this are vanity and gender concerns plus a plethora of pain fears—subconscious issues thrust to the forefront usually at oh, say, 2:15 a.m.. It's already changing me. Rapidly. When I come through this, I will no longer be who I was just a month ago. And I hope, as when Cam and Mads came into my life, it makes me a better person.

So today, I’m thinking I might try to live with the sword of Damocles above my head, as we all do, mine’s just shaped like boobs.

Tomorrow, I’ll be one step closer to a decision. An ultrasound to rule out multiple tumors.

Alrighty Then ...

I'll try to make this brief and post in more detail as I process the information. But what I'm looking at for sure is:

Lumpectomy to remove 2.1 cm (level 2-3 out of 3) invasive ductile carcinoma
Chemotherapy protocol to destroy any cells that may be elsewhere in my body
Radiation on the breast to destroy any cells that may have migrated in the breast

On friday, I have one more ultrasound to confirm regions found on MRI are not cancerous. If it is still inconclusive, they will do another needle core biopsy on Monday. If by chance those are cancerous I will have a mastectomy. And if I need that, I will most likely opt for a double mastectomy.

This isn't a full prognosis, they won't be able to stage my cancer until after surgery. I'll try to describe some of this stuff over the next few days, weeks, months, but my head is spinning at the moment. I'm mostly just happy to know that my lymph nodes feel normal and I ain't gonna die anytime soon (what a weekend!). So what's really crucial to know here is that this a very average breast cancer situation. Women go through this all the time and survive. It's gonna be a b!tch, but, we all got sumthin.

Here's an interesting factoid: my clinic does 200 mammograms a week. Out of those, 10 find breast cancer. If you are over 40 and/or have a family history, please make an appointment for screening today.

Into the Tube

I already had an MRI for my knee a couple years ago, and while it was disturbingly loud, the anxiety was misplaced. They’re really no big deal if you can ride out the noise and claustrophobia. That one was only over my lower body anyway. So, when Judy told me I would need one because my breasts were so dense that a mammogram and even ultrasound were not enough, I was like hey, whatever, let’s do this NOW.

Cheryl and I headed out on the Friday night of my diagnosis to the hospital. They were backed up at the end of the day so we waited an hour and then the nurse said, “It will be a just a little bit longer and then we’ll get you set up with the IV.”

Wait. What? I turned to Cheryl, “Did you know about this?” because she does seem to know about everything, like it was some surprise party they were all planning.

Apparently, they are concerned that the lump(s) have blood flow to them. So they insert a dye into your bloodstream to light up the works. This and the presence of other gnarly buggers is what they will be looking for. I think it means the difference between lumpectomy and mastectomy plus chemo or radiation. But don’t quote me on that because I ain’t going anywhere near Google right now. So, they put in the IV needle (shunt?) without the fluids yet. And of course, it didn’t really hurt that much. Then I entered the MRI room where three young women were listening to M.I.A. and all very perky and sweet.

With a breast MRI you lay stomach down, on a sliding tray, with your breasts suspended through two holes. Your head is on a cushion that has a hole in it and you’re staring at a plastic randomness. They put some headphones on me and I asked for talk radio. But the noise inside an MRI is really too loud to hear anything else. They gave me a rubber plunger to squeeze if I freaked out, then slid me into the dimly lit tube and cranked her up.

It’s really a cool contraption if you think about it, taking thousands of pictures of your body to create a 3D image. It’s like being inserted into a dancefloor speaker and forced to listen to electronica for twenty minutes. When your nerves are a little frayed, it's a slap in the face. In fact, it made me mad. In a good way, like, we are going to kick ass! (Which is actually what I feel like when I listen to electronica.) Halfway through, they inserted the dye, which cooled me down but not so much that I shivered. I made sure not to move too much, but you have to breathe and I kept wondering if that was making my boobs rise and fall too much. Apparently not, because they shut it down and let me out.

I'd have to say the most pain I felt that night was the girls trying to rip the IV tape off my arm. What’s up with the super-glue adhesive?


Tomorrow:
Prognosis

Needle Core Biopsy

I listed those three words as my least favorite a few days ago on Facebook, still cavalier, still in denial. The least I had to worry about was a needle. Here I'd always thought of myself as a keen observer of the world around me and the people I know. But I'm myopic to what's going on at close range. It isn't until I get some time and distance before I realize what I said, or was said to me or the true meaning of the looks on people's faces.

The intake nurse and ultrasound technician started off a little brusque. Not mean, but clinical, you know, professional. When the tech brought up the lump on the monitor and the radiologist took the first core, everything changed. The three women in the room became like family, their voices softened and they asked a thousand questions about my dogs, which I gladly answered. The intake nurse handled my dressing with compassion and some kidding around. Both she and the tech ushered me out the doors and into the lobby, bantering back and forth like we were all old friends.

Only my partner Cheryl saw this as bad sign. She didn't mention it until yesterday, after the core tests came back.



THE PROCEDURE

If you have a mammogram (not really painful, just uncomfortable) that shows an abnormality, the radiologist will order an ultrasound (which is not painful at all). If the lump looks strange then, the radiologist will order the biopsy. 4 out of 5 are normal.

This very non-invasive biopsy is basically an ultrasound tech finding the lump again. Then a radiologist numbs the site with lidocane. She targets the lump on screen with the core needle and it happens fast. I jumped a little because of the pressure and the sound which makes a snap like a staple gun. The core itself resembles a half inch long strip of dental floss.

They took five from my lump. I felt no pain at all. In fact, I barely felt the original needle. I have some tenderness on that breast and a little bruising. It's easy to look in the mirror and start the pity party. What will it look like in a few months? Will I have bigger problems to worry about?

Bring on the next procedure. This is what it takes to save a life.

Let's do this. GRRRR!

Today, Judy (lovely woman) from the Breast Center called to let me know I have invasive ductile carcinoma.

My friend Laura says I should journal it. So, here goes.
Want to walk down the path with me?

Upcoming:

Needle Core Biopsy
All fun and games until the radiologist looks at the screen.

My First Breast MRI
Sounds like Fatboy Slim at a berzillion decibels.

The Prognosis
Find out when I do.