Monthly Archives: October 2016

When Daddy Is Very Ill: Advice for Young Couples with Children

14808926_10209851440495403_3114551_oMy husband Greg had a bone marrow transplant for Chronic Myelogenous Leukemia (CML) fifteen years ago. When he was diagnosed, our daughters were seven months and six years old. (Among their matter-of-fact childhood observations–Abby, at 18 months: “Wake up, go doctor’s?”and April, seven, “All the daddies are dying.”)

Five years ago, Greg had Oral Squamous Cell Carcinoma (OSCC) caused by the transplant. He had a partial mandibulectomy, in which half of his jaw was removed–with his teeth still attached. He recently had cataracts removed, though he’s only fifty–they, too, were due to his treatment.

I often send messages to friends–and many, many strangers–whose spouses or children are ill–quick lists of things they should immediately know, things that others will wait too long to tell them, things that take time to learn.

A young wife replied to one such message early this morning, asking for encouragement. Here is an amalgam of the saved texts and Facebook messages that I have sent to others,  a rambly, brief list of the “lessons” I learned along the way (from many who went before us):

Let people raise lots of money, far more money than you think that you will need. I promise that you will need buckets of money. One thing the newly-diagnosed are initially unaware of is how long their journey will be–you will need money for co-pays and prescriptions for years, and you may both be unable to work, at least temporarily.I usually recommend that families raise a minimum of $35,000, but to find out your minimum, multiply your insurance deductible or maximum out-of-pocket (whichever you prefer) times five, so you will have money for the next five years.

You are going to be tempted to tell your friends to stop the fundraising. You will think you have enough money. You don’t. My family’s financial life has been ruined because we didn’t think about years’ worth of deductibles and copays. Even if your buddies raise $100K, let them. Save it. You will need it.14813224_10209851442415451_1949072246_o

Realize that true friends’ money comes with no strings. Sadly, even when facing cancer, you are not free from criticism. Sometimes, but not often, people who donate money will make snide remarks about how you are spending their money. Friends in the Midwest had their grocery purchases critiqued–“Why are you asking for money and then buying steak?”  Fast food purchases, toys, and even family day-trips are questioned. My husband once quipped, “What do people want patients to do? Stay home and look our medical bills and receipts?”

You can’t radically change your lifestyle and quit all the basic pleasures because you don’t want to appear to be wasting people’s money–when we first moved to Seattle, I balked at even buying groceries because the prices were so high. You may be tempted to cut out date nights or Starbucks–the extras that bring you joy. Remember, your friends donated money because they love you, and you are going to need small pleasures on this long journey.

14858791_10209851442975465_20849605_oYou don’t owe anyone anything. So what if Sally gave you a spa day gift certificate? If you aren’t up to socializing, you don’t have to open your home to her. Buy yourself a “Sorry, No Visitors” sign and use it. I can recall sobbing face-first into my carpet, then rising at an insistent doorbell and playing hostess. You are not a sideshow. You are a person. Allow yourself to be.

You can’t thank every person individually right now. You can’t text everyone who texts you. Your husband and children come first, and you need to rest as well–everyone understands that.(Those who don’t are not worth your precious, precious time.)

If you haven’t made a Caringbridge site or Facebook group, you may want to.  If a very trusted friend wants to manage it, let her. A site may seem like an invasion of privacy, but it alleviates the weariness of repeatedly having the same conversations.

If you have amusing narcissistic friends, keep them nearby. You will get sick of talking about yourself, your husband, and even the baby, so their stories of the guys who were looking at them at the bar actually become life rafts. 14808809_10209851441095418_770306989_o

Do what you need to do for your family and what you need to do to have peace that you have done everything humanly possible to save your loved one. Do not stay in-state to be near your family or to save money; stay in-state because you have peace about it and have done the research and believe it is best. Emory University Hospital would have been much easier and cheaper for us to go to, but it had a 35% lower survival rate than Seattle Cancer Care Alliance. People thought we were crazy to schlep the children cross-country, but Greg survived his cancer to watch them grow up.

Besides, a few months far from home can be a short time, really. Less than 1% of my husband’s life was spent in Seattle. (Granted, it was a long 1%.) Others may be overwhelmed at the thought of six months across country, but their reactions shouldn’t color yours.

Expect in-law issues. He is your husband, but he is his parents’ baby. Prepare to draw and redraw lines. Amid all the emotions, communicate clearly, and be the adult you are. If your in-laws are caring for your children, there may be issues galore–one couple in Seattle had their in-laws arrested for denying them access to their child.

14808713_10209851443215471_1570515859_oYour kids will survive. A move. Inattentive parents. Staying with an aunt. Being carpooled. Too much screen time. Junk food. Disrupted sleep. Cancelled lessons. Missed games. Three months without you. Bad days. (One awful day, all we fed Abby was a boiled egg and a Watchamacallit bar. A two-year old insomniac, the best we had to offer her was a homemade eight-hour Dora videotape. Both girls survived our haphazard parenting.)

 

I have watched a dozen kids from our time in Seattle grow to young adulthood. They are miraculously compassionate, resilient people. (Many are also brilliant scholarship winners–all that time spent reading in waiting rooms pays off).

God know where your kids are. He knows the road they are also walking. He has ordained them to be there. My favorite truth is that God gives easy babies to cancer patients. I can recall days on the hospital floor when the skeletal patients pushing  their IV poles asked, “When will your baby visit again?”

As I tried to console a just-fifteen-minutes-ago widow, Abby was there, toddling around, chirping, “Ria’s heart is broken?” Ria gathered my daughter in her arms and sobbed, “Yes, baby, it is.”

To visit her Daddy, April faithfully donned her Sunday best, knowing gloves and gowns would cover the clothes anyway. She sat in the hot, over-sized gear bringing delight and fueling determination in her father.14858665_10209851440735409_30222687_o

Our girls brought joy and hope to us and to others. Your children will, too. Expect them be joys, not burdens.

Ask for help when you need it. If you want a visitor to bring you coffee from Dunkin Donuts, tell them. (Friends who flew out brought us Sunbeam bread.) If you need someone to drive the kids to ballet, say so. People will do what you need if you ask.

“Navigate the corners.” One of Greg’s first doctors spent almost ninety minutes on the phone with us one night, just sharing wisdom. This was his most important advice.  It sounded strange at the time, but we later took it to mean look at everything, do everything necessary. We kind of internalized it attitudinally.

Doctors today do not really tell you what to do; paths are not as clear as you would like them to be. Read, read, read. Ask questions. When Greg was diagnosed with OSCC,  I emailed top specialists in Paris and at Harvard to ask about treatment–and they responded.Be polite, but ask your questions, and know your options.

Take each HALF DAY at a time.  A caregiver told us that things change so quickly that each half day is different.Even fifteen years later, this is a truth that affects me physically. It makes me weak. Things change so quickly, especially during month-long hospitalizations. The world can be dismal at dawn, joyful at lunch, and bleak by bedtime.

14858674_10209851441695433_1909135423_oImmediately shut down anyone who tries to tell you about their aunt’s neighbor’s cousin’s sister’s cancer plan. Or juice. Or bracelets. Or a guy in Texas or a lab in Mexico. Shut them down. The responses I used were, “It’s like you are trying to sell us a Honda when you know we just bought a Toyota,” and, “I believe we are doing what’s best for our family.”

Listen to the nurses. They kicked me out of the hospital when Greg was very ill–because that day Abby was 18 months old, and the nurses forced me to go get pictures. Fifteen years later, the pictures are still some of my favorites. If they believe you need to go back to your room and nap, do so. If they tell you to eat, eat.

Do not think about work. Walk away. You will have to keep ties to keep insurance, but beyond that, others can cover for you nicely, and you must let them. (I could go on at length about work and identity. Your current, most important identities are patient and caregiver, which stinks.)

Try to eat and rest. (Impossible, I know,  when you barely have time to use the restroom!) Stay away from negative people on the ward. You do not have time for people who bring you down. (If you are in hospital-affiliated housing, this can be tricky. Just remember, your family comes first.)

As a believer, believe what you believe. Doctors told us to expect things, and we told them, “We are Christians, and we do not believe that HAS to happen.” At one point, the doctors in Seattle, who are the best in the world at bone marrow transplants, said themselves, “Surely this is the work of the Lord.”

Don’t be afraid. God is ever faithful. He is so good, and we have seen it time and time again. Think of the wonders He has performed in your past, and look to the future with hope.

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Tonight, for the first time in 15 years of looking at this picture, I noticed that overlooking April, there is Greg. 
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