The Peaks and Valleys of a Life with Cancer

This space could use a little jolt of happy, wouldn�t you agree?

I had my first post-op appointment with my surgical oncologist yesterday. Remind me to stop scheduling things in the afternoon. Waiting around all day turns me into a strung out lunatic. By the time we were ready to leave, my stress level had surpassed its breaking point. Paul drove. I cried.

Perched on the examining room chair, I fidget with the ties of my pink cover-up. My doctor pokes his head in the door, smiling. Smiling is a good sign. I like smiling.

We talk about how I�m feeling. He takes a look at my incision. He decides it�s time to remove the sutures.

�I�ll be right back. I�m just going to run and grab a suture removal kit, ok?�

Ok. But um, like -- do I still have cancer?

I love my doctor. He�s the best. He�s brilliant. And sometimes brilliant people are�slightly scatterbrained? Or eccentric. So I forgive him for not launching into my pathology results the moment he walked in the door. 

As he�s pulling out my stitches: �So the pathology, it all came back negative. The margins are clear.�

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And you didn't open with that because...?!

But who cares! I am blissed out of my damn mind.

To clarify: when you have a mastectomy, a rim of normal tissue surrounding the tumor is also removed, which is called a "margin." My first mastectomy in July resulted in "dirty" or "positive" margins, which is why I required a second operation.

It turns out there is still one area where the margin is "close," meaning cancer cells were not far from the edge of the removed tissue. This isn't ideal, but my medical team is confident that adjuvant radiation therapy and 10 years of Tamoxifen will be more than enough to make sure this cancer knows it's not welcome and it needs to find another couch to crash on.

I practically skipped down the steps to the parking lot. I was giddy. Like a 50 pound weight had been lifted from my shoulders.

And then we got into the car and headed to our second appointment of the day: Roswell Park's Assessment and Treatment Center.

These are our days: ping-ponging from moments of dizzying rapture back to the unhappy reality of Paul�s worsening symptoms: feverish temps, stomach pain, vomiting.

Right before we had left for my appointment, Paul called his oncologist's office to fill them in on his condition. "Come in," they said. They needed to check him over. To rule out an infection or something worse.

It was the usual succession of tests -- bloodwork, urine sample, x-ray. Most of our time is spent waiting.

I crawled into the small space Paul had made for me in his hospital bed, avoiding the tubing that was pumping sodium chloride into his depleted body. We watched Chopped on the Food Network, and I pressed my face against his bony shoulder. Everything: the flit of nurses in-and-out, the boring cable TV, the rough hospital linens --it�s all so familiar. How many days have we spent in this exact position?

Nothing particularly stood out with any of Paul's test results, so they sent us home with a short-term antibiotic (just in case) and instructions to call in the morning to schedule another blood transfusion.

Which is how we will be spending our day tomorrow.

Highs and lows, man. Highs and lows.

What is Mesothelioma, Anyway? 10 Quick Things You Should Know

September 26th is Mesothelioma Awareness Day, so I�d like to turn the mic over to my dear husband, Paul. �Enough with the Liz chronicles. We want Paul!� said everyone, everywhere. 

I hear ya, I do. Let�s talk about meso.

If you�re asking Google (like I did 5 years ago when Paul was diagnosed) you�ll mostly just find lawyer ads and a lot of bleak statistics. Like these numbers are not going to make you feel good. 

And I am not exaggerating about the sue-happy law firm sites. I just typed �Mesothelioma Awareness� into Google and FOUR ads promising �just retribution for a cruel disease� popped up on my browser. So...where�s my money guys? Huh? HUH?

There�s a lot of unhelpful information about mesothelioma floating around on the Internet. So it was by divine intervention, I think, that I was able to find the Mesothelioma Applied Research Foundation while desperately searching for financial assistance a few years ago.

This organization is the real deal. They are: 

�the only nonprofit, charity organization dedicated to ending mesothelioma and the suffering caused by it, by funding research, providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research.�

That ain�t no lie! Personally, the Meso Foundation has helped our family finance a trip to meet with a meso specialist in Chicago. They also host a yearly International Symposium on Malignant Mesothelioma, which we attended in 2015. This event connected us with other specialists in the field as well as families struggling with the same issues we were. (Until that point, we had never met a single soul touched by mesothelioma.)

I�m no clairvoyant, and I don�t presume to understand how certain seemingly insignificant, everyday decisions can redirect the current of our ever-flowing lives. but I believe with a fair degree of certainty that discovering the Meso Foundation CHANGED OUR LIVES.

Because: where would we be if they had never introduced Paul to the team at the National Institute of Health? Would he still have elected to be treated by them? Would he have chosen a different course of treatment? Would we have been given these years that we�ve enjoyed together?

I don�t know.

What I do know is that, for the average person, mesothelioma is a disease shrouded in mystery. Everyone, it seems, has some connection to breast cancer. Maybe their sister had it, or their aunt was recently diagnosed, or they went through treatment themselves last year. Quite literally, (and sadly) everyone I talk to has a breast cancer story.

But when someone asks what type of cancer Paul has, that connective �me too� moment vanishes into thin air, replaced with raised eyebrows and some variation of �Ohhh, the cancer with all the lawyer commercials? How did he get that?!�

Most people know 2 things about mesothelioma:

1. It�s associated with asbestos exposure, and

2. It can make you filthy rich, if you talk to the right lawyer (not the case)

In the spirit of patient advocacy, I�d like to shed some light on the lousy cancer my husband has been wrestling with for the past 5 years.

10 Things You Should Know About Mesothelioma (because this stuff kills)

1.  Typically, meso is caused by asbestos exposure, but not always. As Paul�s surgeon put it, �sometimes it�s just bad luck.� We�ve never been able to pinpoint a definitive place or time where Paul could have been exposed, though we have our suspicions. But suspicions do not a lawsuit make. (We've tried. With three different law firms.)

2.  Asbestos is still present in thousands of older construction and housing and products such as insulation, siding, and floors. If your home was built before 1970, there�s a good chance that asbestos is lurking in the materials. Which brings us to fact # 3 -

3.  I know DIY is all the rage these days, and there�s at least 16 variations of Fixer Upper on TV. (I love these shows, their hosts are magical visionaries.) But hold your horses, sparky -- don�t tear up those dated kitchen tiles just yet! You absolutely must hire a certified abatement crew to identify any questionable materials in your home before remodeling. Asbestos is safe as long as it�s contained, but once you disturb it, it�s game over. Let the professionals remove it or encapsulate it. The right way.

4.  Asbestos STILL isn�t banned in the US. This makes my blood boil. The US EPA (Environmental Protection Agency) has made some strides since the 1970�s to regulate asbestos-containing products. Asbestos is banned, for instance, in corrugated and commercial paper. However, in the United States companies are not barred from importing and distributing many products that contain asbestos such as clothing, vinyl floor tile, and car gaskets. 

5.  Mesothelioma has a loooong latency period. Often, symptoms don�t show up until 20-50 years after the initial exposure to asbestos. By the time the cancer is detected, it�s usually very advanced. For all we know, Paul could�ve ingested a microscopic asbestos fiber as an infant, where it grew silently for years.

6.  Mesothelioma can be contracted through secondhand exposure. This occurs when a family member brings home asbestos particles on their clothing or hair. Patients can be exposed as innocent children and develop this deadly cancer decades later. Not okay in my book.

7.  The lungs aren't the only organs that can be infiltrated by meso. It can also invade the lining of the heart (pericardial meso) and the lining of the abdomen (peritoneal meso), which is what Paul has been fighting for years.

8.  Mesothelioma is an incredibly rare cancer - only 3,000 new diagnoses are made every year. (A disease can only be classified as "rare" if there are less than 200,000 cases of it per year.) Peritoneal meso makes up only 20-25% of those 3,000 cases. What can I say - I'm in love with one rare dude.

9.  Mesothelioma is one of the least funded cancers by the National Cancer Institute.

10.  Only 8% of mesothelioma patients survive 5 years post-diagnosis. A statistic that, at one time, made my stomach drop. Paul, I am happy to report, just passed the 5-year mark this spring. Huzzah! 

Well, will you look at that - you're so much smarter than you were 5 minutes ago. You can thank me by sharing this post to help spread awareness about this stupid disease. 

We Need To Be OK with Not Being OK

In case you were wondering, here are ten ordinary tasks that are impossibly hard to do after a mastectomy:

1. getting out of bed 
2. getting into bed
3. getting comfortable enough to sleep in said bed 
4. opening the refrigerator 
5. opening pill bottles 
6. opening anything 
7. staying awake for more than a few hours at a time 
8. putting on t-shirts 
9. sitting on the same couch as a squirmy 3-year-old 
10. updating your blog, apparently

Things went fine on Monday. As fine as these things can go. No complications, unless you count a bout of nausea so severe it made me reach for the call light. I LOATHE using the call light, so yes, it was that bad. 

No skin grafts were necessary for the wound closure. Thrilling news! We are so, so pleased about that.

By Tuesday afternoon, I was home. I�ve been sleeping ever since. I wouldn�t be surprised if Ingrid equates adulthood with perpetual naps and constant doctors' appointments. Because that is what the adults in her life do: sleep and go to the doctor. She may never want to grow up.

How does this surgery compare to the one I had in July?

Pain level is about the same. Very controllable with meds. This time around, though, it�s like my body is confused about where exactly surgery took place. I have zero pain at my incision site. For the most part, the right half of my torso is entirely numb. Scar tissue and all that.

You know where I hurt? My bum. Swear to God. The pain starts at my lower back and radiates down to my derri�re and upper thighs. My surgeon anticipated lower back pain because of all the skin-stretching going on, so I�m not concerned. Just sore.

�I�m fine, I�m fine, I�m fine, I�m fine, I'm...What Were We Talking About?�

How am I doing emotionally? Eh. The first few days after surgery, your brain can only process things on the most basic survivalist level. You just want to rest, to stop hurting, to be able to stomach a bowl of oatmeal, to heal.

Days pass, and you start to feel better physically. Your brain has enough fuel to move beyond �let�s just stay alive today.� This is where the emotional distress creeps in, ever so stealthily. Or maybe it kicks in the door full-force, robbing you blind and leaving you for dead.

I�d say, on an emotional level, I am coping less than perfectly. I�m not locking myself in the bathroom to cry all day or anything. Most of the time, I�m somewhat getting through my day. When I wake up, I brush my teeth and give my kid cereal. But there�s a new heaviness with this second surgery. Partly because I�m anxious about the pathology results. Partly because I�m unhappy with the way I look. Partly because I feel guilty about being unhappy with the way I look. (Emotions are ALL over the map. Tamoxifen isn�t doing me any favors, either.)

In our house, there�s this chorus that echos repeatedly: �I�m fine, I�m fine, I�m fine, I�m fine.�

�I�m tired, but I�m fine.�
�It�s painful, but I�ll live.�
�I�m repulsed by my own skin, but haha, can�t complain!�

I will live. And there�s plenty more reason for me to be happy with my life than to complain. BUT...am I really fine? Is that seriously the best adjective I can come up with to describe my current emotional state? Am I really 100% OK with having my chest butchered like a slab of meat? No. I would say, um, not.

Yesterday was the first time I really looked at my body without clothing. Like really looked at it.

I grossed me out.

I have an 8-inch incision that runs diagonally from my right armpit to just past the middle of my chest. It meets with a curvy 5-inch vertical cut running down the right side of my torso.

The scars are unpretty, but I can live with them. What bothers me is my lopsidedness - there�s still an implant where my left breast used to be. I�m all for nixing both implants to achieve some balance. At this juncture, however, my doctor didn�t want to add more surgery to what was already a major operation. He preferred to minimize even the smallest risk of complication or infection, and rightly so.

I will be okay. When I am. Until that time, I�m going to be a little bit sad about my less-than-terrific uni-boob. I�m going to be mildly (and temporarily) unhinged while I�m waiting for test results.

You Don�t Need to Bury Your Ugly Feelings Beneath a Layer of Rainbow Sprinkles and Unicorns

Besides, I�m more than tired of these sparkly images of women jumping right back in the saddle after breast surgery. I�m tired of the trite Pinterest memes about �cancer-thriving� (yes, that is a commonly used term) and �feeling strong and beautiful in your skin� right after a mastectomy. It�s total hogwash. I feel the opposite of �strong and beautiful in my skin.� I�m self-conscious and uncomfortable with my asymmetry. 

It takes time (and counseling and drugs and prayer) to achieve that kind of peace. Let�s not kid ourselves.

Let�s also let ourselves be sad. And angry. And human. Why are we so quick to deny our suffering in front of people? In front of ourselves, even? Why are we obsessed with being okay with NOT okay things? Why do we strive to put a positive spin on every last thing that happens to us?

Because we want our sad stories to come with happy endings. We like our challenges in life to come paired with a cute corresponding morality nugget. Pain is more digestible when it's tastefully wrapped in hip kraft paper and sealed with a bow. We like it to be tidy and meaningful. 

Plain old suffering is not the stuff of inspirational Instagram posts. It�s icky, and it makes us uncomfortable, and we don�t like it!

Poking around an Internet cancer support forum, I found a thread where a woman was struggling with her husband�s recent setback in treatment. She was seeking advice on how to remain optimistic in the face of less than hopeful circumstances.

One response barbed me. It read something like, �you just push through it - that�s all there is to it. Never let your husband see your doubt. You must stay optimistic at all times in front of him.�

Nope. No and no! We all work through things differently, but this is just bad advice.

I�m not advocating indulgent sniveling marathons. I�m not suggesting this woman throw in the towel or that she view life through the murky lens of bitterness.

What I�m suggesting is that she ought to be HUMAN. She�s entitled to feel feelings. Even the ugly ones. Especially the ugly ones. It would likely do her husband good to witness the occasional cry, too. You can still be someone�s rock even if you�re sometimes sad about the hard things in your life.

It�s Okay to Not Be Okay

I�ve been both a caregiver to my husband and a cancer patient myself, so I feel like I have the authority to say: It was OKAY to see my husband struggle with my diagnosis. It was OKAY to see him cry on my behalf. It was OKAY for him to lose it for 10 seconds when I took my bandages off this week.

I mean, it sucked big time to see him so distraught. It wasn�t pleasant (remind me - what part of cancer is?) But it made me feel loved in a very raw and personal and honest way.

Truthfully, it would have irked the shit out of me if his only response to my distress during chemo was a plucky, �You�ll get through it, honey. I believe in you!� It would have been kind of uncool if he was smiling in fake optimism while my breast surgeon explained that my mastectomy had resulted in �dirty margins� and I would be needing another surgery.

It is perfectly reasonable and healthy to run the gamut of emotions here. Cancer will do that to you. Life will do that to you.

As the lovely writer Nora McInerny puts it:

�The cure for grief is not �be not sad� and the cure for anger isn�t �be unangry!� It�s feeling all of these things, even the uncomfortable ones, without judging yourself for them.�

Right on!

So feel your feelings. The gross, painful ones too. Stop apologizing for them. Work with them and through them.

That�s how we�ll arrive at being okay. Not by pretending things are brilliant when they aren't. That only leaves others confused and worse - ashamed about their own ugly feelings. 

Instead, let's be helpful by being honest. Let's give ourselves permission to be something other than "fine." Let's be okay when we're ready to be okay. 

Photo courtesy of  Amen Clinics"Paper Smile" (CC BY-SA 2.0) 

A Summer Blogging Challenge: Coleman Edition

I�m a little late to the party, but a fellow breast cancer blogger, Nancy Stordahl, whom I admire greatly, proposed a summer blogging challenge last month. Though the grocery stores here in Western New York are stocked with Oktoberfest, and our temps are hovering right above sweater weather, the calendar agrees with me: it's still technically summer. I got Paul�s answers for these, too. And they�re good.

1. Share anything you want about your cancer diagnosis (or your loved one�s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you�re comfortable sharing.

Liz: I was diagnosed with Invasive Ductal Carcinoma, stage IIIb, in February 2017. The cancer was in my right breast and had spread to my underarm lymph nodes. I was 30. No family history, really. Just one cousin on my dad�s side who was also diagnosed fairly recently. Because a lot of people ask: I found a lump so I went to the Doctor.

Paul: I was diagnosed with Peritoneal Mesothelioma in 2012 at the age of 27. No family history. I guess I felt overwhelmed when I heard the news. I didn�t even really know what Mesothelioma was at the time. I definitely didn�t know how serious and deadly the disease was. I thought I could be cured.

2. What is the most outrageous thing someone has said to you about your (or your loved one�s) cancer?

Liz: Oh, there�s quite a few of these. A well-meaning nurse told me during pre-op, �At least you�re getting a new set of breasts. It�s like an upgrade!� It�s not. She wanted to make me feel better, but it was still the very opposite of what you should say.

Paul: I was having a near-death reaction during a clinical trial at the NIH, and someone Facebook messaged Liz to say �they were praying for us, but Paul shouldn�t be getting chemo or other harmful cancer treatments and that�s why his body is reacting this way. Hugs!�

Liz: Really. Great time to push your self-righteous, delusional alternative medicine agenda on us. ugh.

Paul: Also, people telling me �all I need to do is change my diet.�

3. What is your biggest cancer pet peeve? I know it�s hard to choose, as there are many to pick from, right? But what irks you the most?

Liz: People touting basic self-care habits as cancer prevention. Like if I eat this dish of brussel sprouts instead of this dish of Panda Paws, my cancer will shrink. It won�t. It will just make me sad.

Paul: Anything that starts with �I read an article��

4. What is something you want others to know specifically about breast cancer?

Liz: I�ll admit, I was in this camp before diagnosis, but people - breast cancer is total crap. It isn�t the easy-breezy cutesy disease it�s portrayed as. It KILLS people. It�s made our life very hard.

Paul: This is about Meso, not breast cancer. But I�d like people to know that not everyone gets a monetary settlement. When people hear "Mesothelioma," they usually associate it with all the lawyer ads. We never received any money out of this.

5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

Liz: At first, I didn�t worry about it. Not at all, actually. I was fully confident that if I just pushed through treatment this year, I could get on with my life. Now that we know my chemotherapy did NOT do what it was supposed to and my mastectomy did NOT do what it was supposed to, I worry. I keep myself distracted and busy enough that I don�t fritter my days away with worry. But it�s there. I�m terrified of it metastasizing.

Paul: My biggest worry is that I won�t be around when Ingrid is growing up.

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

Liz: Eh, no. Why is cancer the one disease that people expect to be morally edifying? Like I have this terrible disease, my husband has this terrible disease, and it sucks. If anything, cancer makes us grumpy and tired and sad. But then I guess it does make us more empathetic?

Paul: No, cancer did not make me a better person.

7. What is your favorite cancer book? (No, I�m not fishing for mentions of mine!)

Liz: Oh, I haven�t read any yet. But Paul Kalanithi�s When Breath Becomes Air comes highly recommended by a bookish friend whom I trust. Also, I LOOOOVE Nora McInerny. She wrote about her husband�s battle with brain cancer on her blog, My Husband�s Tumor, and I really need to read her recent memoir It�s Okay to Laugh: (Crying is Cool Too). She is hilarious and honest and wonderful.

Paul: Oh, I don�t read that stuff.

8. Besides your family, where do you turn for emotional support?

Liz: My cat. Seriously, haha! I�ve received loads of pamphlets with different young adult support groups that people tell me �I just have to join because it will help you so much!� But I just don�t go for that stuff. I pray. Prayer is a huge support. Without Faith I would find this much harder.

Paul: My Faith.

9. How many cancer blogs do you read and why do you read them?

Liz: I don�t read any regularly. Mainly, because I am sort of new to this whole thing. I do like Nancy�s Point, though. She is honest. I appreciate sincerity and truth when it comes to cancer. No fluffy optimism for me.

Paul: I just read Liz�s.

Liz: Aw, thanks Paul. <3

10. Do you call yourself an advocate? If so, what drives you?

Liz: I don�t. My life is too full right now to focus on anything other than �getting though.� Being an advocate for anything sounds very important, though.

Paul: Ain�t nobody got time for that.

So, sunglasses. Over or under the headscarf???

So, About Those CT Scan Results...

I can't write a post about "scanxiety" and then leave you hanging with the results. Actually, I can. And I did. And I'm sorry.

My in-laws are in Buffalo for a quick visit from Wisconsin, so writing has taken a backseat. I have exactly 10 minutes of free time. Which I could use to clean out the kitty litter. Or vacuum the crumbs from our nutritious breakfast of saltines that Ingrid and I scarfed down on the couch while watching cartoons this morning. (Obviously, I am a pro at this whole motherhood thing.)

The litter box can wait. So can the crumbs, according to the parade of ants that just marched by.

Paul's scan results showed that things are mostly stable. There is some tumor growth, but it's minimal. Of course, we'd like zero tumor growth. We'd like tumor shrinkage. But I'll take mostly stable, I suppose.

His kidneys are functioning normally again. His hemoglobin went up to 8.7. These are all good things.

Symptoms are reappearing, though (cramping, gagging, vomiting, coughing). At this point, it's hard to say if these are caused by the cancer itself or if they're residual effects from the harsh chemos he had last winter. Either way, they're miserable. Paul would like to perform a simple task such as brushing his teeth without triggering his gag reflex. Wouldn't that be something?

So, we're beginning to look at new clinical trials.

Well, time's up!