Inside Tips and Tricks from a Cancer Jedi

Originally published on Rebelle Society

April 3rd, 2013

If you’re reading this you probably have cancer. Or perhaps you have a friend or loved one who’s been recently diagnosed. Maybe you have a colleague who’s fighting the fight. Just look at this scary map, chances are either you or someone in your life has been affected by this undiscriminating disease.

If you’re like me, you’ve lost some people to the big C and now you’re getting familiar on a first hand basis.

The early days of a new relationship with cancer are tough. You’re just getting to know each other, and the circumstances around your courtship happen at breakneck speed. The following list is by no means definitive; just a few things I’ve picked up along my newbie way.

1. Bring A Friend.

The unveiling of a new cancer diagnosis and the subsequent myriad of information that cascades over your unprepared brain is overwhelming. Like being submerged beneath a waterfall, it can be difficult to tune into any input other that the deafening sound of water rushing over your ears.

A good friend will help you shake the water out of your head, and come back to reality. They can also take got down important information, run interference when you need an emotional time-out, hold your hand or rub your back and be in charge of those all-too-easy to loose hospital garage parking tickets. 

When I traveled to the Avon Breast Cancer Center for my most recent “routine” mammogram follow-up, I didn’t really think that cancer patient was going to be added to my resume. After all, I’m a 36-year old, green juice drinking, vegetarian yoga teacher. I thought women under-40 who exercise religiously, don’t drink, smoke or eat meat, and use only bio-friendly household cleaners aren’t supposed to get breast cancer, right?

So I told my boyfriend to stay at home and brought my friend Megan with me. I thought I’d be told, just as I had the last three times in a row, to get another mammogram in 6 months and we’d be on our way to Newbury Street for an afternoon of shopping and be home in time for dinner. Man, was I wrong…

Thank God Megan was there, because when the NP came in and said “So, you have cancer.” I had to focus all my attention on my childhood friend’s familiar face to keep from disassociating my way into a panic attack. Of course it would have been just as reassuring to have my partner with me, but I have to admit there was something really empowering about having my dearest girlfriend with me. We’ve been best friends since we were five years old.

Cancer will try to break you down, but there’s no way it can’t break a sisterhood bond. We shared champagne and a hotel room that night, and my new diagnosis didn’t seem so insurmountable.

After that experience, I brought a friend to every treatment.

 

2. Don’t let anyone tell you not to look at your phone.

Smart phones are one of the greatest inventions of the digital age. These compact devices pack a powerful punch and become invaluable tools in your cancer toolbelt. Forget your Garmin? Just use the navigation system on your phone, and you call up directions to anywhere you need to go.

Use the search options to find hotels near your hospital, connect you to coffee shops, dry cleaners, laundry mats and places to eat, and with the new integration between Google Maps and Yelp you can immediately review any near-by establishment and find out if it’s really worth investigation.

Many of use already use our phones to find our way around, take photos, and listen to music, but have you ever actually used the audio recorder function? This function can be a newbie cancer survivor’s best friend. Just remember, full disclosure is an ethical imperative. Ask your Oncologist if it’s okay to record your next appointment, and stop worrying about on-the-spot note taking!

 

3. Travel smart and be prepared.

The right cancer gear is key: a great bag, a small cooler and a piece of rolling luggage are the perfect combo for your diagnostic visits or trips to chemotherapy.

If you have breast cancer like I do, say good-bye to your old school messenger bag. I’ve been carrying my mine around the country since graduate school, but if I wear it now it either presses on the tumor in my right breast, or drags across my newly implanted portocath on the left. There’s no winning. So it’s staying at home from now on.

Even if you don’t have breast cancer, messenger bags are best left for co-eds. Now that you have cancer (of any kind), consider yourself in the Doctoral Program of Life, and upgrade yourself to something a little more befitting of the Professor in Residence that you are. A combo of small brief case/attache bag or tote and a carry-on size roller bag are perfect for your infusion visits. I use the Patagonia Lightweight Travel Tote and the Patagonia MLC Wheelie.

In the first couple of weeks of your new diagnosis, you’ll want to be prepared for the random surprise over-night stay.

Your new wheelie should be packed with an emergency change of clothes, a couple of pairs of underwear (they take up so little space you might as well), extra socks, pajamas, and toiletries.

If you´re not traveling that far from your home to your hospital and getting all the way home is not an issue, it’s still a good idea to bring a toothbrush and toothpaste. My first couple of diagnostic visits to MGH (Massachusetts General Hospital) were 8+ hour long events. Freshening up my mouth would have felt great!

During chemo visits, bring a small cooler bag, like the PVC, phthalate and led-free bag by So Young Mother. Find freedom from down-beaten hospital food and pack your own uplifting lunch and snacks.

If you’re too tired or rushed to pack your own, call your favorite to-go spot and order a picnic lunch ahead of time. Every time I trek from Nantucket (my home) to Boston now I stop at The Green and pick up a green juice and organic picnic lunch. This way I can bring a favorite part of Nantucket with me, and feel good about my nutrition all at the same time.

 

4. Do drugs. Lots of them.

Okay, so I’m not really suggesting you smoking a blunt. Certainly not one with tobacco. Duh. But I am encouraging you to call your Primary Care Physician for some pharmaceutical assistance, right away. Before you even need it.

I know that might be a controversial statement, especially in certain circles—but this is not the time to be a martyr, hero, or suffer through any unnecessary discomfort. You have cancer. It sucks enough already.

So there’s no point in being caught off guard, whether it’s because of a headache or an anxiety attack or an unexpected procedure. It’s better to be prepared. Take this from someone who’s been living an exemplary clean life these past few years, and rarely reaches for something stronger than an Advil.

Taking an Ativan before a full day of diagnostic procedures (bone scans, CTs with contrast, and MRIs) goes a long way towards making an unpleasant experience tolerable. It certainly helped me immensely during my first 10 days of cancer and I’m not ashamed to admit it.

Just a couple of days ago I arrived at MGH for my first chemo infusion, only to be surprised by a last minute lymph node biopsy. This is not a procedure performed under general anesthetic, or even that trippy “twilight” sleep they talk about.

If I had been just as prepared ahead of time as I had been the week before, I would have not only taken an Ativan for the anxiety (which I forgot in my aforementioned uncomfortable messenger bag) but I would have also taken some ibuprofen for the torment I was about to endure. I don’t care who tells you it’s a cake walk, a needle deep in your armpit is not pleasant.

A little prophylactic pharmaceutical comfort will go a long way towards easing your discomfort and building your metal fortitude.

 

5. Build Your Team.

If you’re under the impression that you can do this alone, give it up. No man or woman should be an island, especially when it comes to cancer.

You need a solid team.These teammates are the family and friends who are going to be fighting with you, on the front lines. Choose them wisely, and appoint them well.

Having an inner circle of cancer ninjas will give you strength. Appoint a Secretary, Treasurer, PR Manager, Insurance Guru, Domestic Goddess and Hand Holder. Your PR manager can help you send out a cancer newsletter to the people in your community you care about but don’t have enough time or energy to reach out to personally. Websites like CaringBridge.org  allow you to do the same thing while also becoming networking opportunities that protect your privacy more than traditional networking sites like Facebook.

Of course, the very most important person on your team is going to be your Secretary of Defense & Homeland Security; your primary healthcare advocate. This person is typically a spouse, partner or family member. They should be willing and able to take charge of your “situation” at a moment’s notice.

They possess a no-holds-barred imperative to speak up for you and your well-being. This person will not apologize for getting the job done by any means necessary. They should be able to give amazing hugs, find organic fruit in a hospital and make you laugh when an IV is being stuck into your arm.

Internet savvy friends can be charge of organizing food donations or childcare support online. One of my friends used SignUpGenius.com to schedule meals for me and my family and my other friends used Rally.com to start and handle financial donations. Your web advocates can drive traffic to your fundraising website via Facebook and Twitter, or help you set up a widget for your own site, or your employers site.

 

6. Get organized.

You will be inundated with pamphlets, brochures, prescription printouts, discharge papers, authorization forms, and information packets. Designing a way to organize all your cancer materials can be empowering and will streamline your mission: getting healthy fast.

Print up a list of important phone numbers, emergency contacts, volunteer babysitters, and even plant waters should you be unexpectedly away from home for more than a couple of days. Make a calendar with all your doctor’s appointments, tests, infusions and follow-ups. Color code things, use stickers, be creative. Chances are you’re going to carry this thing around with you for a while, so you might as well make it nice to look at.

Many hospitals have all kinds of resources for cancer patients but it’s not always easy to find them. The posters and flyers hanging on your oncologist’s cork board will have a way of blurring over while he’s discussing the best way to attack your invasive tumor. Information reaches critical mass, and you might find yourself blowing off other wellsprings of guidance.

An Oncology Social Worker can help you navigate your way around your assistance options. My hospital, Mass General, offers financial counseling, fertility counseling, the PACT (aka Parenting At a Challenging Time) program, Palliative Care, support groups, a Networking for Patients and Families program, Chaplaincy, and classes in Chemotherapy, Acupuncture, Yoga, Music, Nutrition, Art, and Caring for Yourself.

Additionally your social worker can give you information about discounted hotels and travel assistance. My social worker hooked me up with PALS, Patient AirLift Services, a volunteer organization which arranges free air transportation for individuals in need of medical diagnosis or other “compassionate needs.” Last week, PALS coordinated with Cape Air, who generously flew me from Nantucket to Boston for Chemotherapy.

 

7. Clarify your intentions.

Decide how personal you want to be about your illness before you start posting it on Facebook. If you’re in a relationship, discussing this with your partner beforehand is a good idea too. Be on the same page, it will spare you drama and frustration.

If you decide to go public with your diagnosis and story, Facebook can miraculously put you in touch with other people who share your challenges.

Just this week I’ve met three other women who have survived breast cancer, and without so much as talking to them on the phone, I now feel like we share a deep common bond. When my chemo side effects kick up the cancer sisterhood is only a PM away.

But try to avoid the pitfalls of wasting too much precious time on pointless threads or status update voyeurism. It will zap you, tax you, and may even create jealousy or resentment. You need your energy now more than ever, don’t fall down a social media rabbit hole. 

8. Practice Yoga.

Some combination of meditation and asana, or just meditation or just asana will serve you well in your fight. If you approach your practice the same dedication you use for brushing your teeth, you can make your practice a vital part of your treatment and healing plan. Focusing on your breath will help you stay calm under stormy circumstances.

Sitting tall in meditation or getting grounded through your legs in standing poses will help you slow down and stay focused on the present moment. Twisting will help you detoxify. Opening your heart through backbends will help you use your illness to cultivate deeper compassion for yourself and others.

Not feeling well enough to get to class? If you have an iPad, tablet or laptop, get yourself to a virtual studio. There are some amazing teachers out there who offer their classes online. In fact, since the original publication of this article on RebellSociety.com in 2013, I have created just such an online class for you. The meditations and Yoga for Chemo practice on Grace & Fire: Using Yoga and Mindfulness to Navigate Cancer can be done in a chemo chair, with earphones on, and no one else will be the wiser. I am thrilled to be able to add this content, available with a small donation, to the offerings on CaitlinMarcoux.net

 

9. Create a sacred space.

Chemo rooms are nothing special. Creating a sacred space for yourself can soften the sterility of the hospital experience and can be as simple as bringing a few special personal items from home or as involved as setting up a mobile alter.

For my first infusion I brought a small statue of Ganesha (the Hindu god and Destroyer of Fear/Remover of Obstacles), a rose quartz heart (a gift from my teacher), a beautiful aromatherapy eye pillow, my journal, my Lotus Wei Quiet Mind Energy mist and a few cards from friends I had saved to open for strength on that day. The intentional placement of each item helped me to feel in control of my surroundings and participatory in the healing that was about to take place.

My bedroom altar is a much more involved version with many symbolic pieces I’ve collected both BC (Before Cancer) and AC (After Cancer) and it gives me positive energy, courage and joy.

For a beautiful audio meditation on making things sacred. Listen to Sarah Blondin of the Live Awake Project here.

 

10. Stay stylish.

This can be a tall order, but I’ve learned the hard way, that putting a little effort into your appearance can go miles towards helping you feel more confident and self-assured. During the diagnosis phase of cancer you may simply not have the chance to freshen up. But as you embark on treatment you have an opportunity to uplift yourself every time you get dressed.

On my first trip to Boston for chemo, I was possessed by the Easter Bunny. For some reason I thought it was a good idea to put on a pair of bright pink terry cloth Juice Couture track pants, a white cotton t-shirt, a pink om scarf and my Uggs.  As I was running out the door I traded in my full-length black down coat for my lighter jacket—which incidentally was bright green! I was so caught up in getting to the airport on time for my flight I didn’t even brush my hair. Not a good look.

Even though no one else at the hospital gave me a second glance, I felt disheveled and awkward. I vowed to myself that in the future I would dress elegantly and project outwardly the inner strength and confidence I was hoping to harvest inwardly.

Dress the way you would for an important date with destiny. Whether it’s your favorite pair of skinny jeans and some cowboy boots or a beautiful dress and smart blazer, wear something that makes you feel rich.

Even if you can’t be bothered to put on make-up you can always bring a small stick of mascara with you. And remember, If you pack your roller bag wisely, you can bring a cozier, more hospital bed friendly pair of sweatpants or jammies, should you need to change.

So far cancer is a wild ride with one hell of a learning curve. May we all stay open and receptive to the lessons is has to teach us.

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