A Hundred Gs, Part III
(A Hundred Gs, Part II; A Hundred Gs, Part I)
Last week when I met with my therapist, I landed on a theme that keeps coming up for me:
GUILT.
I feel guilty that I’m putting my family and friends through the stress of having to deal with my illness. I feel guilty when my mom drops everything and comes to town to run my life for a few days when I’m having tough treatments or procedures. I feel guilty asking people to stop at the store for me because I know how busy everyone is already, without having to do my stuff, too. I feel guilty when my husband gets home from a busy day at work and then cleans up the kitchen and does two loads of laundry while writing business emails and presentations and I sit on the couch watching Hoarders. (Those people are nuts — look how normal my life is by comparison!)
I know, I know. It’s ridiculous. There’s nothing I did to bring on this disease or its side-effects; guilt is useless. My life “is what it is”, and everyone does what they need to do to live with it and help us all get through it. No one feels that I’m taking advantage of them, or being lazy so I can lie around with the cat and nap all day. Why am I so wrapped up in the guilt?
I’ll break it down a little: I feel guilty because I feel like I’m not pulling my weight. I feel guilty that my disease is making other people make changes in their lives that, if I weren’t sick, they wouldn’t have to make. I feel guilty when, for example, they shower me with Christmas cards and mad money, because “normal” people don’t have that happen to them, and why should I deserve it any more than any other stay-at-home Mom who’s working part-time and keeping a household running? (Which I’m not even really doing much anymore.)
And (here’s the really ugly part) I feel guilty that my husband and kids are going to have to deal with life after me. Not this month, hopefully not for a few more years, but they WILL have to deal with it. And I know they’re resilient, and we’ve laid good groundwork for sharing emotions and feeling strong and loving themselves and coping with bad stuff, but every time I think about “my mom/wife died of cancer” it makes me crazy. Like, life is hard enough to be a kid/tween/teen without that baggage added to your cart. (At least they’ll have something to write about for their college application essays.)
What’s the solution? I know (and hear from others repeatedly) that my guilt is wasted. No one places any of this responsibility on my shoulders. No one thinks I’m being a manipulative slug. And life is like this: just when you think you’ve got everything under control, something goes all catty-wumpus and you have to readjust. Do I just “get over it”? But I’m a mom, guilt is my JOB.
I think it has to go back to my last post: change the guilt to GRATITUDE. Gratitude that I’m still here, despite the odds. Gratitude that I have such a supportive and energetic family. Gratitude that my friends aren’t sick of hearing about Sarah’s Cancer after nearly five years. Gratitude that I still have such a good relationship with my mother that we don’t kill each other after 48 hours (and Mr. W does, too!). Gratitude that we have thoughtful neighbors with snowplows and -blowers. Gratitude that I can still put on every stitch of clothing that I own and take the dog for a walk in the freezing, snowy, beautiful woods. Gratitude that I live in Boston and have access to the most cutting-edge treatments that have been saving my life for months now. (I’m such a proponent of dump-anything-that-is-a-waste-of-energy (i.e., “Why ME????”) that this should be easy.)
Gratitude that anyone out there is still listening!
Help Me Help You
Over the past couple of days I’ve answered a few cancer babes’ questions about their support teams. These ladies have been relatively new patients, and while dealing with their own fears and worries about their new diagnoses, they are feeling the changes in their relationships with their spouses, significant others, or family members. Reactions have ranged from anger, to cool distance, to hovering, to quiet resignation. They’re all okay, for initial emotions, but the reactions surprised the patients and added another worry to their lists. I’m saddened to hear of the insecurities they’re feeling, right when they need to feel safest and most secure.
In a perfect world, when we are diagnosed with a serious illness, our loved ones would rally to our side, offering support without need for recognition, organizing teams of ride givers, casserole bakers, and garden weeders while maintaining enough distance so we could rest and recuperate without concern. They would have easy and affordable access to support groups that give them the chance to vent their own frustrations and receive advice and affirmation from others who have been down the same path. Their emotions recognized and validated, they could be the supportive, understanding, flexible caregivers their sick ones need most.
Last time I checked, this world was far from perfect (really!), and being the perfect patient or the perfect caregiver may not be possible. But with support, understanding, and strong communication, we can learn to help each other through. I’ve put together a list of tips to help open the lines of communication, and a few resources to go to for advice or help.
- Ask each other how you’re feeling, what you’re scared of, and what you need from each other. Some people think the best way to support a sick loved one is by remaining stoic and swallowing their own fears. It sounds so simple, but sharing what you’re thinking about with your closest allies will not only help them recognize what they are feeling but also understand that you feel the same way. Make sure to see things from their side of the illness; while you’re worried about losing your hair and not being attractive anymore, they may be thinking about losing time at work, feeling like they have no control over the illness, or betrayed by your absence. None of these feelings is “wrong” – it’s only important to identify it and talk about it.
- Try to include your caregiver in decisions about your treatment, to give them a sense of having a little control as well as an opportunity to ask questions of your medical team (with your permission, of course). I know it was helpful, especially in the beginning of my disease when I felt like I’d been run over by a freight train, to have a family member at appointments and treatments with me to ask or answer questions that I had forgotten or spaced on.
- Diversify your list of helpers. I’ve spoken before about the priceless lotsahelpinghands.com – by giving others the chance to do for you you’re also lightening the burden on your chief caregivers. They need to live their own lives in addition to caring for yours.
- Recognize their efforts and make sure they get a break. As a recipient of numerous SpaFinder.com gift certificates, I am a big proponent of the extravagant pampering appointment: it’s customizable; it appeals to both genders, whether your hubs needs some manscaping or just a massage; and it’s something that most people won’t buy for themselves.
- Spend some time with them and don’t mention your illness. It’s so easy, like always discussing the kids with your spouse even on date night, to get pigeonholed into talking about cancer. That’ll just get everyone down. See a movie. Go out for dinner. Spend an afternoon loafing around the local bookstore. You had a relationship with this person BEFORE you got sick – maintain it and it’ll be there AFTER you get well.
While you’re laid up (and there will be plenty of that), spend a little time on the internet looking at resources to help you support your caregivers. Whether they’re joiners and would love to get into an IRL support group, an online forum, or would rather just read some helpful tips to get them through, there are plenty of places to look for more information. Here are some of the best that I’ve found:
- American Cancer Society (www.cancer.org). There’s a whole section for caregivers, with tips for getting through and a section on finding local support.
- American Association of Marriage and Family Therapists (www.aamft.org). Marriage and family therapists not only help couples with their marriages but entire families dealing with crises, traumas, and major illnesses. I chose our therapist from the list on this site based on his experience with young children. (He hasn’t met our kids yet, but knows our family well should I croak it and they need support.) Many therapists will accept medical insurance, and many carriers cover a certain number of sessions per year as adjunct treatment to your illness.
- Ovarian Cancer National Alliance (OCNA) has a great online support community (http://www.inspire.com/groups/ovarian-cancer-national-alliance/). For patients, family members and caregivers, it’s an amazing group of people dealing with and supporting this disease. Post a question, ask for advice, or just kvetch about how crummy you feel – all comers are welcomed and supported with open arms.
- And, for that matter, Inspire.com has online support groups for other cancers, too. Top-notch.
- Gilda’s Club (www.gildasclub.org) has joined forces with The Wellness Community. With Clubhouses in cities all over (although, unfortunately, not mine) and now a thriving online forum, The Living Room, support is available for everyone in the family.
My parting thought? Talk. Talk to each other, about the easy stuff and the tough stuff. Talk about how you feel, what you’re afraid of, how you’d like to be supported. Be open to hear things you might not like; be honest about what’s going through your mind. Talk like it’s the last chance you’ll get. It probably isn’t, but there’s no time like the present. Cancer has certainly taught us all that.
How To Help A Cancer Patient, Part III
Last week we started talking about useful products to keep in your (now-crowded) cancer-patient bathroom to help you get through treatments, etc. and back to your regularly scheduled life. Here are some more favorites.
Comfort
Most patients, even newbies, have some idea of what to expect with surgery recoveries and treatments. There were some big surprises for me, though, and at the risk of sharing too much, I thought I’d pass along some trade secrets. It might get a bit graphic – apologies to the uninitiated.
Your bowels may never have been a problem until you were diagnosed with cancer, especially those of the lower abdomen and pelvis. But starting with CT prep (barium shakes) and moving right through surgery prep, anesthesia recovery, and on to chemo, there will be days when you can think of nothing else. (As a life-long poop-o-phobe, this was a horrible adjustment for me.) Start by asking the radiology department to give you Gastrografin instead of barium shakes before your scans. A flavorless vial of liquid that you mix with the juice or Crystal Light flavor of your choice, Gastro is orders-of-magnitude more palatable than that thick white crap. Not only does it go down so much easier, but it doesn’t seem to run like a Roto-Rooter through my lower intestines for the following three days. If your hospital/clinic doesn’t carry it, start complaining, loudly, until they do. I don’t care if it costs more – make the people who write the checks take a few swigs of the banana-flavored “Smoothie”, and they’ll be on your side in a jiffy.
On the other hand, anesthesia of any sort, various chemo agents, most narcotic pain relievers, and nearly all anti-emetics push your GI tract off the opposite cliff. (My gal Kelly Corrigan refers to it as “tear-jerking constipation” and is not wrong.) With the chemo protocols, it’s really smart (and pretty easy, once you figure out your patterns) to prepare your body ahead of time: lots of fiber, fruits and veggies, and plenty of hydration the day before your treatment. Once you’re on the chemo, make sure you keep your nausea under control (take the Zofran before you need it), but maintain your system with Senokot (or the drug-store generic) – I used to take one to two pills, three times a day, for the first week after treatment. If senna isn’t enough on its own, and you’re DRINKING tons of water and GETTING SOME EXERCISE (yes, even just a stagger down the block), you may want to add Miralax. I personally couldn’t stand this stuff, but have heard others swear by using it routinely. On occasion, I needed to escalate to Milk of Magnesia, and there were two post-anesthesia occasions when I had to ride the Fleet train. My advice: get on top of your symptoms early, and keep adding more aggressive interventions until the problem is solved. Skip the middle-of-the-night run to the 24-hour Walgreens at all costs.
Jeez, I’m just having a little freak-out that I’m actually discussing all of this. (See earlier comments about poop-o-phobia.)
When all of this colon fun gets to be too much, ask your doctor for Anusol. Take warm baths with Epsom salts. Stock up on Tucks and Prep H. ‘Nuff said.
Nausea
The stomach gets really hammered during cancer stuff. Fasting for blood tests. Heartburn from chemo. Nausea from nearly everything. There are lots of options to get you out from under it, so don’t stop trying until you find a solution that works for you. My first oncology nurse, a 30-year veteran, God love her, told me when I was feeling nauseous, to eat something, and that might cure it. If eating didn’t make it better, then medicate it! I was lucky enough to have Emend covered by my insurance, and it was fabulous during my first round of chemo. Last summer, I got IV Aloxi as a pre-med before my carbo/taxol, and it worked just as well, without me having to remember to take it. Zofran makes me a little nervous, because although it’s very effective, and widely prescribed, it bungs me up like a cork. Ativan is lovely, if you can swing it, but there better be another responsible adult in the house if I take it. (Great for naps and bedtime.) These anti-emetics are so effective that even after four years of treatments, etc., I have only actually thrown up once, and that was when I was trying to avoid taking Zofran. Silly rabbit.
Heartburn during my IP chemo often felt initially like nausea, but once I started taking Prilosec every morning the nausea disappeared. If you’re feeling nauseous, you might want to start with heartburn meds and escalate if those don’t work (especially as they won’t terrorize your colon like Zofran).
Sleep
One of the best (?) things about cancer is that I’ve been able to catch up on my sleep. Daily naps that I used to feel guilty about when the boys were toddlers are now necessities, and the family accommodates my soporific indulgences with good-natured ribbing, if not stocking feet. Thus I recommend a good pair of earplugs, which make napping anywhere, any time effortless. Next time you’re on an airplane, buy their blanket/earplug/neck pillow set, and you’ll have a Nap Kit ready in case of an emergency. All for less than $10.
Only sometimes you won’t be able to sleep. The steroids that come along with so many treatments can make sleep a tantalizing illusion, even when you’re exhausted. For you, I have no personal recommendation other than Ativan or Tylenol PM, which gave me just enough sleepy oomph to drift off and ignore my lower-back pain last spring. I’m sure there are better options out there, I just haven’t needed them myself – I hear Ambien is fantastic.
That seems to have exhausted my expertise for meds of all sorts. I can’t believe that we spend time talking about these issues, but cancer babes (and dudes) have to stick together and get through this. I’d love to hear about your favorites. Never know when I might need to use them, right?
How To Help A Cancer Patient, Part I
How To Help A Cancer Patient, Part II
How To Help A Cancer Patient, Part I
When you first hear the words, “You have cancer,” instantly a million things pop into your head. If you’re like me, after the initial “Holy sh!t I’m going to die” comes, “Who’s going to run carpool this week?” or “Oh, no, my house is a disaster area and people will be coming over.”
Once other people hear you have cancer, they unfailingly end every conversation by saying, “Let me know what I can do to help.” But at the time, you can never think of anything, and then when you think, “Wow, I wish I had someone to walk the dog tomorrow…” you can’t remember who it was who offered to help (chemo brain). How can something so generous turn out to be such a royal pain?
Within about forty-eight hours of my surgery, my crack research team (read: family members with internet connections desperate to DO something) had located the best Gyn/Onc in the area for my case, researched the then-hot-and-trendy-new IP chemo protocol, sent Edible Arrangements, and hooked me up with a lifesaving website that would feature prominently in my treatment and recovery plans for the next three years (and may come around again).
Lotsahelpinghands.com is a website that allows an administrator (you? your BFF?) to set up a free homepage for the cancer patient and their family, friends, and supporters, who log onto the site and sign up with a password once they are invited to join. The administrator sets up “tasks” – events as simple as picking up drycleaning or running to the grocery store, or as complicated as making a meal with specific dietary requirements (not too spicy, the kids don’t eat tomatoes, etc.) and bringing it over to your house. The sky’s the limit; my administrator set up “daily laugh” tasks so people would send me email jokes, and people from my then-kindergartner’s class signed up to host playdates for him and his little brother. I had people weeding my garden, raking leaves and planting mums in the fall, and delivering more delicious dinners than any one family could eat in a month of Sundays, except Mr. Wonderful was involved so we ate it all.
The BEST thing about lotsahelpinghands (aside from it being free) is that it gives the overwhelmed family a way to pass off some of the crazy-lot of organizing that comes with the new regime. And the seemingly unceasing refrain of “How can I help?” has an easy outlet: sign up for the website and start taking on tasks.
The OTHER best thing about lotsahelpinghands is that it taught me to let go a little and lean on others. My family is so self-reliant (and Mr. Wonderful and I slight control freaks) that allowing other people to take over and fold my laundry was nearly painful at the beginning. But as my kids and I got more used to giving up some control so we had more time to be together as a family (especially important when it seemed there might only be a couple more years) I realized that it was one of cancer’s silver linings. My boys learned the value of doing for others, and we now are honored to pay it forward whenever we get the chance. The sense of community may have been more instrumental in my survival than the chemo.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 