Everything Changes - The Guide to Young Adult Cancer

In the midst of radiation treatment my home was like grand central station with visitors coming and going all day long. I needed the help and the company, and was grateful to have people stopping by.

But for some patients, having visitors isn’t as easy or welcomed. Many folks don’t want anyone around when they look and feel like crap. Others want privacy and alone time. And lots of guests just don’t know how to behave in the best interest of the sickie.  So, I’ve come up with  a list of  tips for both patients and visitors:

For Patients

- Nobody is a mind reader. Email friends and family about your wishes.
- Think about who you are willing to have see you at your worst.
- Let people know if it is not okay to visit at the hospital or at home.
- Clearly broadcast your energy level and the length of visit you’d like.
- Demand people stay away if they have germs.
- If you’ve got a roommate or partner get clear with each other so if you have different desires you don’t send mixed messages to guests.

For Visitors

- Have awareness. The goal is to be helpful, even it means staying away.
- While visiting, ask what you can do to help out around the house.
- Sometimes help without asking. If the trash is full just take it out.
- Never stop by unannounced.
- Don’t overstay your welcome.
- Silence can be comforting. Offer to sit together without talking.
- Think about visiting with the sick person’s kids, partner, or caregiver allowing the sick person time to just rest

What are some of the best and worst stories you have about people who visited you when you were sick? Do you have any tips to add to the list?

Check out more about the dynamics of family and friend visits in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Grass is always greener on the married side of the cancer fence.  Or is it?  Here’s a quote from Katie Smith, who I interviewed while researching Everything Changes:

“I learned about my diagnosis in the recovery room after waking up from an operation and learning they had done a hysterectomy.  The first thing I thought was ‘What is my husband going to think of me now?,’ because we had been trying to get pregnant.

“I started seeing differences in how he acted with me.  We weren’t getting along.  We still wanted kids and he really wanted surrogacy.  It was hard for me to think about our kid being half him and half from another woman.  I wanted to adopt so it would feel equal. We talked a lot about it.  I signed up for an adoption class but he never showed up to class.  I was so mad sitting there by myself.  That was a big sign to me that he wasn’t that interested. Our marriage broke up two months later.”

I hear so many stories about the single cancer patient who finally falls in love (yep, I’m one of them too.)  But what about people for whom cancer crumbles a relationship?  Did you know that the divorce rate for terminal cancer patients is higher than the national average?

I know from experience that being single with cancer can suck, but I think that having cancer in an unloving or unstable relationship must be equally if not more challenging.  A lot of relationships that are already on the rocks sometimes just cannot sustain the emotional, financial, sexual, and fertility stress of cancer.

Some studies show that older couples often weather the marital stresses of cancer better, and that young couples are more likely to divorce in cancer situations than older couples.  Why?  When you’ve been with someone for decades you learn how they respond to stress.  Many older couples have already had kids.  They also have different expectations about what needs to happen when you jump in the sack.  Not always so for us young ones.

I’m curious to know, has illness made an impact on your relationships?  Has it taught you something about your partner you didn’t already know?  If your relationship ended during illness, was there any sense of relief that came along with the stress or sadness?

Learn more about cancer marriage and divorce from HollyAnna, Tracy, and Sheila in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.
11/11/09 - I wanted to give a quick update to this post.  A study just out shows that a woman is six times more likely to be separated or divorced soon after her cancer diagnosis than if the man in the relationship is the patient.  Wow.  The rate when the woman was the patient was 20.8 percent compared to 2.9 percent when the man was the patient. It also shows that the longer the marriage, the less chance of divorce after a diagnosis.

The study, “Gender Disparity in the Rate of Partner Abandonment in Patients with Serious Medical Illness,” was published in the Nov. 15 issue of the journal Cancer. The other corresponding author is Michael Glanz, M.D., of the Huntsman Cancer Institute at the University of Utah School of Medicine.

Rick Gribenas is an artist and lymphoma patient quoted throughout my book Everything Changes. I’ve become friends with his wife Charissa since Rick’s death this past spring.  In addition to starting an organization, BRICKS, she’s been writing about her real time experience as a young adult widow.  Her first guest post was “How To Be A Widow on Myspace”, here’s more from Charissa:

“‘There are no rules for this,’ a very wise friend told me. And by ‘this’ she meant my mourning. She’s not a widow herself, but a level headed, tough-as-nails lady who knows a little bit about a thing or two. She’s the one who hopped in her car minutes after my frantic text message alerting her to the passing of my husband, and drove from Philadelphia to Pittsburgh so I wouldn’t have to spend those first few days alone. Of all the things people said to me over those awful, confusing days, this is the thing I have kept with me.

“I worried about my decisions, about facing each new challenge and how
I would deal with my own, chaotic emotions. There are no rules for this. No matter what, every decision I made was the right one, it had to be. I would know it was the right one. Whatever I felt in my gut was the thing to do, was. This was no time for second guessing myself, or doubting the validity of my feelings.

“Anticipating events and how I would handle them worried me over the following months. March turned into April, and suddenly my husband’s birthday was in front of me. I invited friends, I bought a case of his favorite beer and a cake he certainly would have approved of. We ate and drank and laughed and cried and it was everything it needed to be. The days got warmer and July was here, and I anxiously counted down the days to our 2nd wedding anniversary. I spent that night alone, in the foreign quiet of our house, feeling strangely at ease about the
whole thing. I realized that we celebrated every day, grateful for what we had found in each other, and the marker of the day we announced it to the world didn’t feel as heavy as I had anticipated.

“Some days surprise me with nearly unbearable misery, and others that I expect to be unbearable bring a peaceful calm. Either way, I fall asleep (eventually) and wake up to a new day. I get through it, and keep going. I take it one day at a time, and do whatever feels right for getting through it. After all, there are no rules for this.”

I’m curious to know how the rest of you cope when life is  hard and there are no rules. Is it comforting and easier knowing that it is up to you to forge your own path, or is it more challening to have no guide or reference point?

I think there’s an expectation that having cancer is going to make my work, relationships, or goals in life more meaningful or important.  But why?

Shannon is going to be a guest on tonight’s Stupid Cancer Show about cancer and the environment.   (He’s an environmental lawyer for the Natural Resources Defense Council).   Preping for our interview, I asked – in my best Terry Gross voice – “Did meeting your wife, a cancer patient, reinforce your commitment to your work on the environment and healthcare outcomes?” His answer: “No.  Not really.  I cared about this work to begin with.”  Reason #210 why I love this man.

I guess the assumption is that we’re all just a bit too lazy, unkind, uncommitted, shallow, or careless in our lives and need cancer as a wake up call.  But, I think I had a pretty meaningful life before my diagnosis, just as Shannon had a pretty great commitment to public health issues before meeting me.  I’m mostly happy for people who’ve gotten more meaning in their lives from cancer.  But I’m also a bit sad for what their lives must have looked like prior to cancer if they needed this disease as a makeover.

The burden is on cancer patients to live profoundly meaningful lives because we’ve seen the light.  Be shouldn’t we all strive to lead meaningful lives, be good to our neighbors, smell the roses and help old women across the street whether we’ve had cancer or not?  Just turn on the news, walk down the street, empathize with anyone who has lost something or someone.   Wake up calls are everywhere.

It was a relief for me to hear Shannon say that my cancer was not a wake up call for him.  Call me crazy, but I’d like to think that the greatest assets I have to give him are not two malignant tumors in my neck.

Was cancer a wake up call for you?  If so, in what ways?  If not, why not?  Do you ever feel like there is an expectation that you should have become a more whole or better person because of your cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Greg and other  young adult cancer patient who said they’d choose to get cancer again because of the positive change it made in their lives.

Mark your calendars. Monday, June 8th, 9 PM, EST for the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We will have three experts on air focusing for an entire hour on cancer and sex!

I got a great email today from a blog reader who was writing me about some issues down there – mostly feeling like she is popping her cherry every time she has sex with her spouse. These down and dirty sex issues are real problems and we have few forums in which to talk about them and receive expert advice.

So, over the next few weeks, I’m going to request that you leave in the comment section of my blog questions you would like to have read on air. Remember that there is an anonymous option in my comment section, so nobody will ever know who you are and you have carte blache to ask whatever questions you like.

Be as graphic, real, and hardcore as you need to be. Sage Bolte is one of the experts. I interviewed her in my book Everything Changes and believe me – NOTHING is too graphic to discuss with this woman.

We all look forward to reading and hearing your questions!

In the Young Caregivers section of my book Everything Changes, I write about a study that shows while cancer patients and caregivers both suffer from quality of life and mental health issues, patients have a greater sense of spiritual wellbeing and social integration than our caregiver counterparts. We tend to bounce back, and sometimes even benefit from the cancer experience, while caregivers are left alone to pick up the pieces.

Some say patients cannot help caregivers, I disagree. My husband Shannon should be canonized as a saint for his caregiving both in crisis moments and on a daily basis. It is easy to identify what he does for me, but I asked him what I do that makes his job easier. We came up with a list - it doesn’t just apply to partners, but any caregiver: parents, friends, siblings, roommates.

1. Make a break
Caregivers may feel guilty taking a break. Patients need to encourage and facilitate it when able. I email Shannon’s buddies suggesting they go out for Belgian beer. He usually won’t pick up the phone and make plans, but if his friends initiate, he goes and enjoys the time away.

2. Lean on others
Your caregiver can do a lot, but they cannot be your everything. Get support elsewhere. Sometimes when I’m crying at 3AM I pick up the phone and call my mom. Shannon is here for me too, but he is really glad to get a break and a good night sleep. Let others in.

3. Give internal updates
Be a good communicator. Let your caregiver know how you are feeling without being bratty or reactive. If my hormone therapy is messing with my head, I tell Shannon nicely that I’m on a hormonal roller coaster, I hope he can bear with me, and I apologize in advance should I become a bitch. If I’m scared about an upcoming test and don’t want to talk about it, I don’t just go silent. I tell him nicely that I’m scared and it is easier for me not to talk about it.

4. Listen to them
Find lulls when medical, administrative, and household chaos is not erupting and ask your caregiver how they are doing. Maybe they don’t want to burden you and feel more comfortable unloading with a friend, but at least give them the opportunity. (Warning: only initiate this kind of conversation if you feel secure, objective, and free of cancer patient guilt, otherwise you are opening Pandora’s box.)

5. Squeeze two fingers
Did you know that it is less bone crushing to squeeze someone’s pointer and middle fingers together instead of squeezing their whole hand? Think about that next time you grasp for your caregiver’s hand during an IV stick.

Do you believe that patients can be supportive of caregivers? What are some stories you’ve had about what works or doesn’t work in the patient-caregiver relationship? What other tips would you add to this list?