The Caregiver’s Perspective

I recently got a note from a gentleman named Cameron whose wife had contracted another one of the deadly cancers that start with the letter “m”—in this case, mesothelioma. He learned much through his wife’s journey through her illness, and asked if he could share his story here. Here it is (Update: And here’s a link to a video of Heather’s experience. It’s powerful.):

Lessons Learned as I Cared for My Wife

It’s hard to imagine how you will handle a life-changing cancer diagnosis until it affects you directly.  My wife and I were proud parents of a baby girl, Lily, who was born three months earlier.  That day in November 2005, we faced a fearful reality as my wife’s doctor gave us the news.  Mesothelioma left us facing the holidays with a grim realization that Lily’s first Christmas could be Heather’s last.

We had a few choices for treatment locations.  A local university hospital was more convenient while an excellent regional hospital lacked a dedicated mesothelioma program.  We decided on a Boston mesothelioma specialist, Dr. David Sugarbaker.  We knew that we needed the best resources to have the best chances for Heather’s survival.

The diagnosis certainly disrupted our routines.  Emotional turmoil made it difficult to operate, but I had to be strong for my wife and my daughter.  I only worked part-time during this period in order to be around for Heather, and she couldn’t work at all due to her condition.  Our finances were affected severely.  I also faced the realization that I could lose her in spite of our efforts.  I dreaded the thought of losing my wife and being left to raise Lily alone and broke.  While I experienced many tearful moments, I continued to be composed in Heather’s presence.  She needed every bit of encouragement that I could provide.

Our family and friends proved invaluable through this time of difficulty.  I meet many people who worry about imposing on their loved ones when they walk through similar circumstances, and I encourage them to allow those friends and family members to provide support.  Heather’s parents took Lily in and enabled me to accompany my wife to appointments and to be there through her surgery, radiation and chemo.  My strongest advice for any caregiver or cancer patient is to accept every offer of help that comes your way.  There is no room for pride in a cancer fight, and even the smallest offer of help can be a weight off your shoulders and will remind you that you are not alone.

There’s no doubt that it’s difficult to care for a cancer patient.  The stress and uncertainty are heavy, but expressing these emotions can be tough.  You can’t just walk away from this situation because your loved one needs you desperately.  Don’t give up hope just because you feel helpless.  Keep going, making the most of every available resource.

Over the following months, Heather would undergo grueling treatment for mesothelioma under the care of Dr. Sugarbaker and others, and miraculously, she came out the other side free of cancer.  It’s been seven years since her devastating diagnosis, and she is still healthy and cancer free to this day.

Our challenges enabled me to face new goals with determination and success.  Two years after Heather’s diagnosis, I went back to school.  I even had the opportunity to speak at my graduation.  I wouldn’t have imagined this opportunity in previous years, but our battle against cancer prepared me for the challenges of school.  Belief in yourself and perseverance are both important in making it through any difficult time.

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Wanted: Participants Needed for On-line Study

From the MPIP board: The University of Pennsylvania is working with an international consortium of melanoma researchers called GenoMEL.  The project is being led by Julia Newton Bishop of the University of Leeds, England.  The study examines two key questions:  How do people interpret their risk of melanoma and what protective measures are acceptable to them.

Go to www.genomel.org to complete the survey.  Thanks for helping out!

I took it (takes about 20 minutes or so), and am curious to see the results.

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Recurrence fears

Even though the surgeon told me that recurrence rates for someone in my circumstances is 5-7 percent, I can’t help but worry. Especially after reading about so many whose mel recurred years and years after the initial diagnosis on the MPIP board. Yikes.

So it looks like I’m going to go from being seriously lackadaisical about my health (if it ain’t broke, don’t fix it) to being downright paranoid…

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One way to get over white-coat syndrome

Not my favorite way, but with all the doctor visits I’ve been having lately, I should get over my white-coat syndrome terror of they-who-wear-stethoscopes!

When my regular doc’s take-Advil-and-take-it-easy advice had zero effect on my screwed up non-melanoma knee, I went to DH’s chiropractor to see if he could work some magic on Monday. My knee still hurt, but my back felt fabulous! Then yesterday it was way worse, like I couldn’t make it all the way down the driveway to get the mail.

But today, knock on wood, the pain finally seems to be backing down. I was getting worried about stressing out my mm leg and popping the scar open! And of course, still lurking in the back of my mind is “bone mets. Must be bone mets.” Saw Dr. Joe again and got cracked in about 20 places, lectured on my bad posture and non-ergonomic workspace, and inundated with ortho pillows to try to keep me from killing my back slouching around in my favorite chair.

I’m really hoping that with icing, exercises, and rest it’ll back to normal by Sunday, because I have to go to a conference in Seattle next week and hate to think of trying to hobble around a convention center.

So, tomorrow I have the eye doc, then Dr.s Joe and Tanabe (surgeon) on Friday. Then hopefully I will be doctor-free for a while. No offense to the docs, but I’d really, really like that!

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Scans revisited

In a comment in the below post, Amy asked if I was considering a PET scan even though the nodes came out negative, because there is a chance it could have spread via my bloodstream.

About getting scans: I am agonizing over that (see this post). I will talk about it again when I see the surgeon next Friday, but he strongly advocates not scanning, even if it was in the nodes. I want scans, particularly since my friend’s husband had negative nodes, then came up stage 4 two years later–it spread via his blood to his lungs, then moved on from there. It’s rare, but it can happen. When it happens to someone you know, the fear is even greater.

So, I’m not too comfortable with “watchful waiting” and three-month derm checks.

Plus, I have the feeling that I’ll turn into the world’s biggest hypochondriac and think every sneeze means it’s back. Already a sore knee got me thinking about bone mets.

If he stays adamant about no scans, I may have to switch to another doc, even though I really, really like this guy. I just think it’d make me crazy not to at least have a baseline and yearly check of some kind other than a regular physical and derm checks. Or maybe my regular physician can order these? I’m not sure how this all works.

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Lies, damn lies, and statistics

But in this case, I’ll consider the survival statistics for my melanoma situation to be true, because they’re awfully good. First, the staging. The primary tumor is T3a, node status is NO, distant metastasis is MO.
Which puts me at Stage IIA, a most excellent place to be, especially considering where my mind was putting me yesterday.

The five-year survival rate for people in my situation is 97.0%, and the disease-free survival rate is 93.3%. Doesn’t get much better than that. Everything drops precipitously if mel has spread to the lymph nodes. But mine didn’t. Oh thank you powers that be!

Can’t even begin to say how good it felt to wake up this morning smiling and disease-free. I wish I could bottle this feeling.

Life is so incredibly precious, and I plan to enjoy every minute of it I’m being granted.

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Sue, meet NED

Talk about a whiplash day. I was just here in my home office cleaning up a few last things for the night when my phone rang, and for some reason I answered it. It was Dr. Tanabe! With the results!

Drumroll please….

Lymph nodes negative
Excised skin negative

I have met NED (no clinical evidence of disease), and I think I’m in love!!!!!!! This is a double-fudge brownie with hot fudge and whipped cream and sprinkles Woo Hoo yahoo holy &*()^%$ OMG I am so happy and screaming and crying for joy night. I can’t wipe the smile off my face.

Thank you Dr. T for the best anniversary present ever (today is DH and my 15th anniversary)! DH and I are laughing, and crying, and laughing again. I know we still have to pay attention and things could change. I remind myself that Joe’s lymph nodes were negative before he went straight to stage IV. Anything can happen with this horrid freaking beast of a disease.

But my survival odds are looking pretty damn good right now.

So cute: My sister called and left a message while DH and I were out for our celebratory dinner. She goes, “Woo hoo!! Just called to say Woo Hoo!” Feels so amazingly good to laugh again, and everything’s good for a laugh right now.

Woo hoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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