saying and doing

To recap, four weeks ago I learned that what I thought was a small burst blood vessel was suspicious pigmentation. Eye cancer can be associated with skin cancer. My fair skin, blue eyes, and nearly black hair don't exactly help. Thank you, Mom and Dad, for the fabulous genes. Moreover, my grandmother died months before I was born, and I knew one thing about her: she wore a glass eye. I soon learned she died from a rare eye cancer that swiftly - as in a month - metastaized and killed. She traveled several hundred miles to be under the care of the same rockstar oncologist I've been seeing. Her cancer is not supposed to be genetic, but here I am with a little bit of naughty cells struggling wih impulse control.


Whoa.


My diagnois can lead to such fun words as "potentially lethal" and "metastasis." God made things happen and, less than two weeks from discovery, the pigmentation was removed by the world's best. The biopsy results say not benign but not invasive...yet. I'm looking at lifelong, frequent eye oncology check-ups in addition to twice-yearly skin, liver, and regular eye exams. And, if it comes to it, chemotherapy is oncology eye drops and radiation by a litle mini impant...though that often leaves the patient legally blind. I continue to pray that there are no metastisized cancer cells lurking elsewhere, paricularly in my skin and liver, but otherwise doing well. (Prayers for my liver and especially my skin and eyes are welcome! I crave prayers for my pretty paper-white skin!)

I've learned quite a lot in the past weeks. And I thought I would pass a small amount of it along. From someone who volunteers with those dying of cancers - witnessing last earthly breaths - and who learned she herself might be looking at a nasty cancer. What to say and what not to say to someone in the beginning stages.

1. Please, when I tell you that I might be looking at cancer, do not make your first response, "but your hair is so gorgeous!" Whether she will lose her hair is one of a woman's first thoughts immediately after she is told to see an oncologist. Trust me. Not a new thought. I know you're thinking it, but keep it to yourself.

2. Saying "call me if you need anything at all" is absolutely well-intentioned. But someone staring down potential cancer feels powerless...and picking up the phone to ask for help only compounds that feeling. Particularly when we are used to being helpers, not helpees. Yes, those of us with control issues fully ought to Get Over Ourselves. In the meantime, try "I drive right by your place every Monday and Wednesday, and it would be no trouble to take you to work those mornings" or "If you get your prescriptions called into Pharmacy X on Y Street, I can easily pick them up for you" or "You know that Friday is taco night at my house. Can I drop off some tacos for you Friday afternoon?" An offer to take charge of something concrete is much more helpful than an invitation for me to phone you. I was so incredibly humbled, touched, and blessed when random folks reached out and said "You're friends with my cousin and I know you're going in for surgery in two days - do you need a ride to/from?" Parents, please, raise children like that. A simple concrete offer like that from a friend-of-a-friend means so much.


3. Do not stop by unexpectedly. Consulatations, second opinions, pre-operative clearance exams, etc. are a job in itself. I might be out or snoozing off anesthesia or recovering from a cry...and I probably don't want to answer the door in a robe and unkempt hair. At minimum, a 15-minute head's up gives me enough time to get out of jammies and wash my face.

4. Please do not bombard me with cancer-themed anything. I'm sure some people draw great strength from cancer-y books and the like. That is fine. Unless you 100% know how it will be received, don't give any books or suggest any groups or mention "survivors". I'm scared and selfish and I don't care about anyone else's story right now.

5. Do not question whether cancer in a particular body part is even possible. Cancer is just misbehaving cells. Cancer is possible wherever there are living cells. People do get cancers that have yet to be assigned a color or afflicted a celebrity. I know. I'm truly happy to explain all this to you! But, please, believe me. That you don't think a certain cancer is possible does not mean that my brilliant, world-famous oncology duo, I don't know, have devoted their careers to a non-existent cancer. Whoops.



Questions and learning are 100% awesome! But insistening that you are far above decades of oncological research is not.

6. Please do not tell me what Dr. Google told you, good or bad. I've already researched prognoses, survival rates, and treatments well into the night. And understand that, at some point, I need to put my trust in one team of physicians...not jet around the world to see the guy in Mexico with a miraculous cancer-curing diet, not get 51 different opinions.

7. Easy on the sweets and caloric comfort foods. I'm already scared. I don't want to be scared and struggling to zip my skirt. Fresh fruit or washed and cut veggies are awesome. A quick "hi, at the store, what are you craving?" phone call is a great idea, too!


8. Give me something to look forward to! A friend did the sweestest thing: she took my car to get a full interior detail (with a q-tip!) job and told the garage to take their sweet time. I'm unable to drive for a few weeks. There is no car in the space to remind me that I can't drive...and I'm totally looking forward to a sparkling car!

9. If there is some kind of big holiday coming up that you usually celebrate together, be flexible. No pressure to appear for a specific date! Offer to, as appropriate, delay the holiday a week or have two different celebrations. Instead of a passive-aggressive "Christmas just won't be the same without you..." try "We're looking forward to two celebrations, one this week and one the next week/month." Please remember that I might need/want to remain in close proximity to my oncologist or a well-equipped ER for a while, that travel can be more complicated than you think, and that holidays can be easily and happily celebrated outside some arbitrary date. I am not deliberately fouling your table settings. Please don't make me explain the complexities to you - just trust me when I say that certain plans are impossible.


10. Please try to be mindful that I have limitations other than what is obvious. In my case, keeping one hurt, healing eye covered throws off my balance and spatial reasoning. I need help crossing the street but can still work. I am healing, and I can't risk being introduced to new germs...so I will have to decline your child's school play. I am a rawther delicate flower right now and I can't risk any jostling to my healing eye...so I will have to meet your new puppy at another time. Remember, too, that pain medications can make me wobbly. Please don't make me feel like a drama queen! I hate needing help. I hate that I now Have Issues, albeit temporary. I hate that I need to ask you to wash your hands for a full 30 seconds, hate that I can't attend your New Year's bash, hate that the "look left, look right" of grocery shopping leaves me physically and mentally exhausted. When I say "my limitations are X until Date," I'm not kidding. I am probably pushing myself more than I should as it is.


11. That said, get me out of the house as appropriate. Even just for a car ride. And insist I put on some lipstick. Really.

12. Humor! Humor! Humor! I love being called Cleopatra (half my face is wrapped up like a mummy). Do not tiptoe around the big fat gassy elephant. (Far more discretion is warranted with cancers of the reproductive bits, and any humor with gender-specific cancers should be dispensed - carefully - only by those of the same gender).


13. Don't treat me like bad luck and don't make me want to smack the stupidity out of you. Now is not the time to say, "gosh, I've had this weird bump for a few months, but after you...I'm so scared to get it checked out."

14. If you know what I'm going through, reach out with a helpful tidbit. A lovely, lovely woman whom I had met once - the sibling of an office janitor - handed me a box of "Get Regular" tea knowing the - ahem - side effects of painkillers...thus marking the first time I've wept over senna tea.



15. Patience. If I'm being a whiny pain-in-the-arse, tell me. Don't let me wallow in self-pity, either. But - seriously - cut me some slack. Don't treat me like a fragile delicate child, but, remember that pain and anxiety and fear can all make me irritable. The Big C is not a "Get Out Of Jail Free" card. But if I'm uncharacteristically short, please attribute it to pain and/or anxiety.



16. Pray. I don't care if you pray to my Lord or to the bulb in your fridge. I love prayer, or any assortment of vibe-, groove-, or positive-thinking you may send up. Please don't stop. I can buy medicine, treatments, candles, and perfumed bath sets. I can't buy prayer.