Caring for the Caregiver

By Scott Westerman
Colleen and I recently learned that one of our good friends had been told those three words that make your blood run cold. “You have cancer”. Much has been written about how to care for a recovering cancer survivor. But there isn’t a lot of advice out there for those of us who are thrust into the role of caregivers. I wrote the following letter to our brave survivor’s spouse. She suggested that I share it with you.

The worst thing about this caregiver stuff is feeling helpless and alone. Here is the woman we love, suffering the unspeakable horrors that are necessary to prolong the quantity and quality of existence, and there’s not a damn thing we can do about it.

You will feel like you don’t know what to do to help her. That’s normal. Be present. Listen. Love. Do all those wonderful things you already do so well. Sometimes just being in the same room with her is all you need to do. Allow yourself to tell her that you wish you could make the pain go away and that it breaks your heart to watch her go through this. Reassure her that you will get through it together, that you’re not leaving, that she’s beautiful without the hair (she will be, by the way), that surgical scars are the decorations of victorious warriors. All the things you first fell in love with will still be there.

Your steadfast support will mean the world to her, even when the stuff that’s coursing through her body to save her life may make it impossible for her to express it.

Moods tend to become amplified during times like this, so don’t be surprised if the lows feel lower than you’ve ever felt. There will also be moments when you guys will also want to laugh so hard that your nose will run. Let the feelings flow, whatever they may be. Fully experience everything, the good and the bad.

You may think that you have to keep it together on the worst chemo days. That’s ok. Sometimes compartmentalization is, itself, a survival skill. But make absolutely sure that you find a place to blow out the emotions as soon as possible. It’s very easy to compress all of the bad juju on top of the lifetime of suppressed issues that you’re already pushing around in that invisible wheelbarrow that’s chained to your wrists. If you don’t take the time to bring it back up and process what’s hurting, your own body will react, perhaps in some very uncomfortable ways.

Allow yourself to fully feel, whenever you can. It’s hard. I still struggle with it and have to consciously force myself into the dark spaces to dig the bad stuff up and let it wring me out. I don’t like that exercise, but just like throwing up after you’ve eaten some bad pizza, it’s what your mind/body/spirit need to cleanse.

Don’t forget to keep that fitness program going at full throttle. Exercise is medicine. Eat right, even if the love of your life doesn’t feel like she can. I did a lousy job in that second area, because: 1) I can’t cook and 2) I’m too lazy to think about putting the right things together when it’s much easier to eat Pringles and drink Coca Cola. Don’t be like me.

You may not believe it now, but you have the strength to be the witness your woman needs to help her through this. And you have the courage to take care of yourself even as you take care of her.

And here’s another surprising thing we discovered. Your senses become more acute. The flowers will have more color. The grass will seem greener. The smell of the air in the aftermath of a rainstorm will be indescribable. These are things you will get to keep, even after you are done with this monster. These are cancer’s gifts: awareness, mindfulness, and the ability to experience the second life you will be given more richly than you could have possibility imagined.

And understand one very important thing: You don’t have to do this alone.

Find a therapist. There’s nothing better than paying someone smart to help you make sense of suffering. Everybody needs a shrink. Get one and unload your burden.

Some of your best friends may be uncomfortable walking beside you. This is a challenging experience and not everybody is equipped to cope with it, even from a distance. But other amazing people will appear at just the right time, with just the right mixture of empathy and honesty to renew your strength. These are the people you can flood with long, angry, emotional emails whenever you need to. They will take your calls anytime, day or night. They will do what you need most at a time like this; they will listen.

And, perhaps most importantly, it’s ok to reach out to those who have gone through this before you. No one can truly understand another’s journey until we’ve walked the path. Some may be less comfortable than others in reliving the ups and downs of caring for a survivor. But many will open their hearts to you. There is an unspoken bond you will instantly feel, an instant connection that can provide hope and strength to both caregivers.

Cancer was the toughest battle Colleen and I have yet had to fight. But it also turned out to be some of the most important, illuminating and loving times we’ve experienced as soul mates. I hope you won’t have to go through this. But if you do, make it the defining moment of your life. You will discover that the greatest gifts are not in the outcomes. They are found along the way.

Gratitude

I wrote this during Thanksgiving week, 2012. For some reason, I never posted it. But it’s just as meaningful today as it was then.

We’re feeling especially thankful this Thanksgiving weekend. Thankful that chemotherapy and all that comes with it is in the rear view mirror. Thankful for Colleen’s 6.5 CA125 numbers and hearing the words “full remission” from Dr. Reynolds again last week. Thankful that the alchemy of science, faith and hope have so mixed to give us not just a second life, but a third. Read more…

The fear that never goes away

Scott and ColleenI start to notice it sometime on Tuesday.

Friday is when we have our next CA125 test and doctor visit. Every single one since Colleen was again declared “in remission” has been perfect. Her strength continues to return and our lives are focused outward. We are making plans, thinking about a future without chemotherapy and its ugly side effects, dealing with the day to day drama that becomes instantly unimportant when you’re fighting for you life.

We have no rational reason to be afraid.

I preach living in the moment. It makes no sense to worry about something bad that might happen, unless it’s something you can work to avoid. We’ve done all we can to that end. We expect a life of quality, with all the normal ups and downs that come with it.

But the fear never goes away. Read more…

Catching up

Colleen WestermanSept. 28 was my last chemo. Number 6 of 6.  I can’t believe more than a whole month has gone by since then. I guess I have had many things happening to my body since then and let’s face it, I’m not that good at keeping up my blog. Looking back, I have have so much to be thankful for. One thing for sure, a happy dance in celebration of being done with the chemo. Anything that brings on a happy dance is a good thing. Read more…

The big catch up.

Colleen WestermanWow, I don’t even remember when I posted last. It’s been a few weeks I know. I will try to include all that has been going on, or at least the high points.

I’ll begin with the phone call I got from my Oncologist (Dr. Ampuero) in Albuquerque. I haven’t seen him in over 2 yrs, he’s the dr who originally diagnosed me back in 2009. He referred me to U of M when we moved to MI in 2010. He and my current dr. (Reynolds) are apparently in contact and Dr. A. called because he got the info about my recurrence. He is one of the nicest most caring doctors I’ve ever had. He spoke to me for 30 minutes, at the end of his day. He was caring and supportive and I was so happy to hear from him. There are many things to like about him but the one thing that sticks in my mind is that he gives his cell phone number to all his patients so they can reach him any time they need him, day or night. I find that amazing. I still have it but I have never used it. What a wonderful man. He’s 70 yrs old and has no plans to retire. He has a club of patients who meet for dinner once a year, on him, who are 5 year survivors. He takes a group photo each year and hangs it in his office for all to see. He has many patients who are Ovarian Cancer survivors that come each year and their stories are all so compelling. I plan on being one of those women and returning to Albuquerque as a 5 yr survivor. I want to be a part of that group. I will be a part of that group. Read more…

Five

The fifth one is the worst. By now, you’ve watched her struggle with the poison four times. And the bad days are bad. You don’t want to go to work. You want to be by her side. You want to help ease the pain. But you can’t do a damn thing about it. And that’s the worst part. The two of you actually agreed to pound her precious body six times, hoping that you’ll kill the monster without doing serious damage to the victim. That’s what you keep telling yourself every time the poison goes in and through every minute of those bad days when no amount of medicine can take away the side effects.

I preach the Stockdale Paradox. “Face the brutal facts of your current unpleasant reality, but never lose faith that you will ultimately prevail.” It’s easy to be a preacher, until you actually walk a few steps in Stockdale’s shoes. And that happens the fifth time she gets the poison. Read more…

Anita

It’s not easy being first born. Parenting is brand new so you have the shortest leash. You’re the one they learn on, so the mistakes come fast and furious. When the siblings arrive, you are the one who is pressed into service. They can be envious. They may think mom loves you best because you were the oldest. Even as you are told to “babysit”, they challenge your authority. You learn early about responsibility and are forced to grow up before you’re ready.

That was Anita’s start in life. Colleen’s oldest sister had to experience everything first; the good and the bad. She was smart and attractive and encouraged her parents to bring more like her into the world. She accepted the expectations everyone put on her shoulders and grew into the good wife and mother that became our role model. Read more…

2/3 There! Heck we’re sliding down the hill now..it’s all fun, right?

Colleen WestermanHello my faithful followers. You are so patient. Since I had my last chemo (mind you that is my 4th of 6…YAAAY) last Friday I’ve been in my usual hole, not posting a lot and this blog takes more than I have until a good day. Today, is a good day. I’m feeling better this week earlier than the last 2 rounds, so I’m very happy. There may be 2 reasons why that is happening, first one is my doc. reduced one of my chemos’s (Taxetere) slightly to make a difference in the affect. I was also given a long acting anti-nausea drug on Monday which might be helping too. What ever it is, I am so grateful. It sure helps in the eating and drinking fluids dept. It never hurts to be back in the living a few days sooner too. Read more…

#4 Chemo, more than 1/2 way finished.

Colleen WestermanToday was the 4th of scheduled 6 chemos for me. Another wonderful friend of mine, Lynda White spent the day with me from 7:45am until 4pm when the chemo was over. I don’t know if she really understood what she got herself into but she was there for me and we ended up having the best time, laughing most of the day away. Lynda drove me to UM to meet with my dr before chemo in Lansing at 1pm. We drove with no delays on I-96 even though they are supposedly working on it. I saw my dr’s partner today, Dr. Buckanovich. I liked him very much. He is pretty straight forward, doesn’t soften things too much but is very engaging and honest. He spoke to Dr. Reynolds about dropping the dosage of Taxetere a little since I had such a hard time the last time (after effects lasting into 9 days). I’m hoping that makes this next week a bit easier for me. We got out of that appt pretty early, in enough time for us to go to Soup Spoon Cafe for lunch, then onto my chemo appt at Sparrow at 1pm. Things went smoothly there. I spoke to Holly the PA about the after effects last time and they did some tweaking of my meds in addition to the changes made in my chemo. This week has to be easier..I’d take even a little bit.

In any case, thank you Lynda for spending this day with me and making it alot of fun. We need to spend more time hanging out when I’m done with this and feeling better. You are so sweet and such a pleasure to be with. Love ya girl!

Not sure when I’ll feel like blogging again. As always, thanks for following along. Be well and happy.

Why we love Date Night

Here’s a cancer prescription that the doc’s don’t talk about: Date Night. In our experience, it can be more powerful than surgery and more healing than chemo.

One of my friends sent me this blog post from Raluca State. She belittles the idea of Date Night, saying that maintaining a relationship is a daily thing.

I agree with that last part, the challenge of living with an ever evolving individual is immense. But she’s wrong when she states that “the pressure that comes along with (date night) — the notion that this three-hour, once in a blue moon pause is going to save or strengthen a marriage — is a hard pill for me to swallow.”

Your first mistake, Raluca, is thinking that date night is a once in a blue moon thing. It shouldn’t be. Date night should be a weekly celebration, a few hours you can count on that don’t focus on the career, the kids or the day-to-day. Date night is knowing that at least once a week, you can sit across from one another in a restaurant, any restaurant, look into each other’s eyes and remember why you made the commitment in the first place.

You are right about the fact that maintaining a relationship is hard work. It requires habitual care and feeding. But it’s easy to get caught up in routine. That’s where the magic can start to slip away.

Over 35 years with the love of my life, I’ve learned to never stop doing the things I did to win her in the first place. I send her love notes, text her occasionally during to the day to let her know I’m thinking about her and call her at least once to see how her day is going. We still celebrate the little holidays like big ones; the day we first met and valentines day get the full birthday treatment. And we have our own tradition of sharing cards on these days. Not just one, but one in the morning, one at noon and one at night.

We try never to go to bed mad, Raluca, because two of the best moments of our day are the moment we wake up and greet each other with a tousled morning smile and the welcome ritual of holding one another for a few minutes every night before we drop off to sleep. “Love you no matter what,” is the mantra we always modeled for our kids, too. Sadly, thousands of children grow up without feeling the security of that unconditional comfort.

Life can be an exhausting road. There are too many things out there that diminish our self esteem and suck away our energy. The very accomplishment of finding someone to love and will love you back is too rare an occurrence.The miracle of discovering someone with whom you can share these ups and downs, someone who is committed to loving you, no matter what, is worth celebrating every chance you get.

Date night is a priority with us. We rarely miss one. I schedule my travel around it and everyone at work knows that Wednesday’s a 5PM, I’m outta there.

Our weekly habit of pausing to focus on how lucky we are is therapeutic. It recharges our spirits, reaffirming the love that makes it possible for us both to not just survive, but thrive in an uncertain world that is too often dominated by disappointment and negativity. It’s an affirmation that miracles can happen, if we take the time to find and nurture the soul mates each of us deserve.

Try adding the date night habit with all this in mind, Raluca. I think you’ll be glad you did.