MEMORIZING NORMAL … WHAT WAS THAT?

It was another trip to the oncologist. About 3 months ago, I was checking out my fake breasts and found something that hadn’t been there before. Now, before everyone starts to worry, don’t. I felt it in the right breast — like a hard, flat piece of scar tissue. It was located directly below the scar line on that breast. I didn’t find anything like it on the left breast. I did a little check on the internet and discovered that yes, there is a kind of cancer that can feel like hardened scar tissue in an implanted breast. It is rare and usually what you are feel is exactly what it is: a hardened piece of scar tissue.

I thought about it for a few weeks. Finally, I decided to see my oncologist. I’m seven years past my original cancer. Anyone who has had cancer knows you are never “cured” of cancer. You can be in remittance for a lifetime, but it can come back. Anytime, anywhere in your body.

If you come from a cancer-prone family, you could get an entirely new type of cancer in some other organ. If I’ve learned nothing else, it’s that successfully dealing with one disease doesn’t stop you from getting another.

I’ve also learned to not trust how I feel. I always think I’m fine. This is probably a survival mechanism. I will probably die while being convinced I’m suffering a mild and temporary setback or maybe a weather-related allergy.

So, I wasn’t worried about this turn of events. I hadn’t been concerned about what turned out to be bi-lateral cancer. Back then, I was sure it was just a benign cyst. It turned out to be cancer in both breasts.

Essentially, my prior record on guessing what’s wrong with me (I was also sure my heart was fine) has proven 100% wrong, so I went to see Dr. Tahir in May. He agreed it’s probably nothing more than hardened scar tissue. If I want to be absolutely sure, we could run a CT scan.  I’ve gotten so much radiation over the years, I’m hesitant to allow more radiation. Also, the co-pay for a CT scan is $450 which I don’t have. So I declined. He suggested I come back in a couple of months and see if anything had changed.

This was that followup visit.

Waiting at the Dana-Farber

Nothing had changed as far as I could tell … or as far as he could tell. He did encourage me to call him if anything bothers me at all, no matter where or what. I know this is for my benefit because he doesn’t believe I will call unless I think I’m actually about to croak. Still, the urgency of his tone — CALL ME ABOUT ANYTHING ANYWHERE, ANYTIME — made me edgy.

Some of this is probably about money. For want of $450, am I putting my health at risk?

I’m fairly sure (probably, maybe, or at least I think so) that if I thought this was life-or-death, I’d get the scan and figure out how to pay for it later. But, it’s also possible I want to avoid more surgery — even if it is life or death. I’ve had far too much surgery. Far too many hospitalizations. Far too many close calls with death. It’s not that I want to die. I vastly prefer life to the alternative, but I’m tired of being sliced and diced. I’m tired of years of recovery and being told how great I’m going to feel … later. I’m still waiting to feel great.

Meanwhile, all the blood work came back normal. Normal, normal, normal with a slight elevation in liver enzymes,. But that was true last time, so maybe that’s the new normal. Blood pressure normal. Weight up a little. No one except me seems worried about it. The blood levels are a pretty good indicator that nothing major is going wrong. Something would show in all those tests … right?


Sometimes I feel like a potato being slowly grated.

Every year or two, doctors remove a piece of me. Sometimes a little piece — a couple of bad heart valves, for example. Sometimes a couple of breasts. Once, a piece of bone in my leg and they added two implanted breasts, two replacement valves and a pacemaker. I believe that makes me two new pieces above my initial out-of-the-factory model.

Approximately 75% of me works almost as well as the original bits. That’s what my memories tell me, but normal is so distant in mental time, I have to work from memorized tidbits of what “normal” felt like. Of course, the rebuilt me isn’t quite the same. The individual pieces look okay, though — if you don’t look too closely. And I keep my clothing on.

BUSY DAY AND FLOWERS

We are not busy bees, buzzing from activity to activity. So much stuff gets done online, many of the busy things we used to do are no longer necessary. But — and there’s always a but — there are some things which require a personal touch. This was one of those days.

My final activity of the day was visiting the oncologist — never my favorite activity on any day. I was supposed to do it a month ago, but I wasn’t up to it and deferred it to today.

I needed to go to the post office and mail a small package and, we sold the yellow car. It hasn’t left home yet, but it’s merely waiting to be picked up. Since the new insurance policy came through at the end of last week, this seemed the right time to deal with officially removing the old car.

Yesterday, I went online yesterday and cancelled the plates. Today, I took the paper to the agent and changed our insurance policy to just one car. In our lives together, this is the first time we’ve only had one car. When we were both working, there was no question about needing two vehicles. These days, we rarely need two. I suppose there will be times when we need a second car, at which time we’ll just have to rent one, should it come to that.

I was surprised that our insurance dropped by half. I didn’t think one little old car was costing that much. So I guess it was a good thing and now, we don’t have to replace the tires, the brakes, and the dead battery.

The oncologist is another story. Anyone who has had cancer, now or previously, knows that the periodic visit to the oncologist makes you edgy. The long scar on my right breast has developed a hard piece of scar tissue underneath it. I have been working hard at ignoring it, but it kept bugging me. Last January, I went and saw the nurse practitioner (the doctor was on vacation) and we agreed it didn’t seem to be more than what I thought it was — a hard piece of scar tissue.

Today, at the doctor, we reached the same conclusion … with a proviso. If it seems to be growing or getting harder, back I go. And instead of my usually year between visits, I’m back in three months. It could be something. It probably isn’t. But … it could be. This is why cancer is not a lot of fun. A lot of things could be nothing, but then again, they could be something. And that something is not good.

I’m good at forgetting and with a little luck, I’ll have forgotten this entirely by tomorrow morning. If Medicare didn’t charge $450 for an ultrasound, I’d probably have sprung for the test. I don’t know about other retirees, but I don’t happen to have that hunk of money, so unless I think it’s life or death — it will wait.

Still, a lot got done. I finally got to see my doctor and a lens is on its way to Arizona. Our insurance dropped to as low as insurance ever gets.

For a few minutes when we got out of the hospital, it was sunny and I could see that spring really has come. Most places, anyway. It is less apparent here because our trees are all oak and they have no leaves yet. Other places where they have ornamental trees or maples, there are some small leaves and many flowers.

Since a few days ago, we gained two gorgeous yellow tulips and hillside of Solomon’s Seal has sprung up. It is amazing. In the middle of last week, I saw no evidence they were growing at all. Oh, and the Columbine are starting to bloom. It has been cold and rainy … but finally, spring is coming.

STAYING ALIVE

In 2010, I discovered I had cancer in both breasts. Two tumors, unrelated to each other. Just twice lucky. They removed the tumors and the associated breasts, gave me very attractive fake replacements. Much perkier than the old ones in an artificial implant sort of way. I have a little ID card for my breasts, like they have their own personae. Maybe they do. Thus, a little more than seven years after the siege began, I’m officially a survivor. Almost but not quite.

My mother died of metastasized breast cancer. My brother died of pancreatic cancer 10 years ago, having never gotten as old as I am. This is not a reassuring family history.

All chronic illnesses make you paranoid. The thing that’s so insidious about cancer is its absence of symptoms. The possibility that it is growing somewhere in your body and you won’t know it’s there until it’s too late, is about as scary as disease gets. Nor is it a baseless fear. I had no idea I had cancer — much less in both breasts — until it was diagnosed twice during a two-week period. One diagnosis of cancer is hard to handle. A second diagnosis a week later is like getting whacked over the head with a bat. It leaves you stunned, scrambling to find someplace to stand where the earth isn’t falling out from under you.

I don’t think most of us are afraid of dying per se. We are afraid of the journey we will have taken to get there. We’re afraid of pain, suffering, the humiliation of dependence and gradual loss of control of our own bodies. After having one or more close encounters with the dark angel, no one is eager to feel the brush of those wings again.

We are called survivors, which means that we aren’t dead yet. The term is meaningless. Put into perspective, we are all survivors. Anyone could be felled by a heart attack or run over by an out-of-control beer truck tomorrow. The end of the road is identical for all living creatures; it’s only a matter of when it will be and what cause will be assigned. Everyone is in the same boat. If you’ve been very sick, you are more aware of your mortality than those who who’ve been blessed with uneventful health, but no one gets a free pass. The odds of death are 100% for everyone.

Recovering from serious illness is a bumpy road. Each of us has a particular “thing” we find especially bothersome. For me, it’s dealing with well-wishers who ask “How are you?” If they wanted an answer, it might not be so aggravating, but they don’t want to hear about my health or my feelings about my health — which are often as much the issue than anything physical.

They are being polite. So, I give them what they want. I smile brightly and say “Just fine thank you.”

I have no idea how I am. All I know — all I can possibly know — is that for the time being, I am here. To the best of my knowledge, nothing is growing anywhere it’s not supposed to be.  Six-and-a-half years after a double mastectomy, I am in remission. That’s as good as it gets.

The real answer for those of us who have had cancer, heart attacks, and other potentially lethal and chronic ailments is “So far, so good.”

That is not what anyone wants to hear. We are supposed to be positive. Upbeat. You are not supposed to suffer from emotional discomfort. Why not? Because if you aren’t fine, maybe they aren’t, either. They have a bizarre and annoying need for you to be bright-eyed and bushy-tailed no matter how you actually feel. It’s their version of a vaccine.

Since cancer, I’ve gone through major heart surgery and having survived that, I figure I’m good to go for a while. None of us are forever, but I’m alive. Presumably I’ll continue to stay that way.

Welcome to surviving. It’s imperfect, but it beats the hell out of the alternative.

SYMPTOM | THE DAILY PROMPT

ONCOLOGY AND AN INTERESTING BOOK

REPLACEMENT BREASTS – NOT QUITE ORIGINAL ISSUE


Anyone who has had cancer, no matter how many years have passed, knows you are never “cured.” The best anyone can say is “so far, so good.” Cancer isn’t a single disease. There is no test to tell you your body is free of cancer cells.

This is, of course, true of everyone from birth till death, but when you have had a run in with cancer, it stops being theoretical and morphs into something more sinister and personal. In 2010, I had a double mastectomy, losing both breasts to cancer. It wasn’t a prophylactic double mastectomy. I actually had cancer in both breasts. Two unrelated tumors at the same time. The odds against getting breast cancer in both breasts simultaneously are incredibly small. I seem to be one of the those people who manages to beat normal odds — not in a good way.

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After the mastectomies, I got instant reconstruction. Two silicon implants replaced my breasts. They do not, as people imagine, look like real breasts. When you are in the tunnel through breast cancer to (hopefully) recovery, you find yourself answering weird questions. Like “how large do you want them to be?” Do you want nipples? Saline or silicon?

I went with smallish and no nipples (they require two extra surgeries and they are entirely for appearance), and silicon, which feels more real. I suppose it’s all for appearance, really — the appearance of womanhood matters when the parts have been replaced with something that isn’t real flesh.

Everything went well — or as well as these things ever go. I hoped I was done with cancer. Imagine my surprise when I realized there was something hard underneath the scar across my right implant. Flat, hard. My first reaction was “What the hell?” Can I get breast cancer without breasts?

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I hit the Internet to discover it is probably scar tissue. Or (unlikely but not impossible) a very rare form of skin cancer that grows directly under the mastectomy scar. Rare isn’t impossible. Not in my world, so reluctantly, I made an appointment at the Dana-Farber. It is the only dedicated cancer facility in Worcester County and has been where I’ve done all my follow-up since the surgery.

I had my surgery and reconstruction at the Faulkner Hospital in Boston. My surgeon and plastic reconstruction surgeon are the best. Anywhere. Literally described by my local oncologist calls “the dream team,” If you have breast cancer, this is as good as it gets and if life throws this at you, I strongly advise you to find the best surgeons, even if they aren’t convenient. You want to get this right the first time.

My oncologist thinks, as I do, that it’s nothing to get excited about, but we’ll watch it. If it seems to be growing, or starts hurting, we’ll move on to testing. In the meantime, I take a deep breath and can return to worrying about the lunatic pretending to be President who seems intent on making my personal angst irrelevant by blowing up the world.


As this was going on, I have been reading. A lot. Most of the books have been lackluster, to put it kindly. Life and Other Near-Death Experiences: A Novel by Camille Pagan grabbed me from the first page and kept me engaged to the end, wishing that it wouldn’t end. Which is a pretty unusual thing to say considering the book is about a young woman who discovers she has a very rare, aggressive form of cancer and her marriage comes unglued — at the same time. Literally, both things hitting her on the same day.

life-and-other-near-death-experiences-coverWhat takes the book out of the ordinary from other books that deal with life and death, is it never takes the easy way out. No cheap or easy solutions. It confronts real-life decisions that people in major life crises are forced to make. It does so with humor, wit, and realism.

The main character of the story freaks out when her life falls apart and needs time plus substantial support from family and friends to face her new reality. It’s the most realistic story about dealing with cancer I’ve read and it wasn’t depressing. Not a guffaw filled romp or a vale of tears. It reminded me that how we react to appalling news varies, but we all react. You cannot fail to be changed by facing death while realizing there’s no guarantee you’ll beat it, no matter what you do.

Once you’ve had any medical crisis that will kill you left untreated and might kill you anyway, even with treatment, you never look at life the same way. You don’t take life as a given. None of us should ever take life for granted, but most of us do. Until we come face to face with the dark angel and he’s holding our number.

This is a good book. A surprisingly good book. I hope it will get some attention. It is lumped into the category of “humor” where it doesn’t exactly fit … but I’m not sure where it would fit. Maybe humor is as good as any other placement.

Regardless, any book that can make you laugh in the face of death is worth a read.

REFRESH!

REFRESH

Today, after having postponed this appointment three times, I finally went for my annual checkup with the oncologist.

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I like my oncologist. He’s a very pleasant, easy-going, friendly guy. Low key. Not an alarmist. Sensitive and sensible. But, in the end, he’s the one who will tell me if I have cancer. Again.

So, as much as I like the guy, I’m not eager to see him. Too much history.

I’ve been doing well. I’ve got more energy than I used to, probably because of all the heart surgery a couple of years ago and having a pump that actually is delivering oxygen to my body. I think my breast bone has finally knitted. I no longer hear it grinding when I move.

Fake breasts

My double round of breast cancer is now 5-1/2 years past. This makes me an official survivor. I have no symptoms, no lumps, no nothing. I have exactly the same chance of getting some (new) kind of cancer as anyone. Maybe a little higher because it runs in my family, but basically, I am (finally) regular folks.

If you think of “refresh” as that thing you do on your computer monitor to clear up garbage and update your open apps? Today was my “refresh.”

I’m clean. My panel of tests are spot on normal. The lab lady found a live vein on the first stab, too!

It doesn’t get better than this.

MR. COFFEE AND BREAST CANCER

It was the best of times, it was the worst of times. I was just out of the hospital having had a bi-lateral mastectomy. I came home in pain, shock, full of drains and swathed in bandages. I felt I had been bludgeoned and the world was upside down.

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My best friend was staying with me. She had stayed with me in the hospital too. The very definition of friendship is that one person who will sleep in a chair in your hospital room for three nights to make sure you’re okay. They don’t give medals for it, but they should.

coffee

I didn’t recover quickly. It wasn’t just the physical changes or pain. Breast cancer requires a revision of a woman’s sense of self and womanhood. There’s no such thing as “simple healing” when one loses significant pieces of ones body, especially those pieces which are specifically identified as “feminine” and without which … well … it’s different.

I was not a happy camper, but I was alive. I had a family, my friend, and a few good computers. There was food to eat, coffee to drink. More slowly than I imagined possible, I got better.

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Until the coffee machine died. One morning, I slunk into the kitchen and there was water everywhere. The Mellita machine we’d had for a  few years sprung a leak. Its life ended in a giant puddle on the kitchen floor. It’s actually quite remarkable how much more water 12 cups is when it escapes its carafe and takes up residence on the floor.

We tossed the Melitta in the trash and realized we were in the midst of a major life crisis. We most urgently, desperately and immediately needed a new coffee machine.

Garry and Cherrie went to the local Walmart — literally the only shop in town and it isn’t even our town, it’s two towns over — and ended up buying a Black and Decker. It was a 12-cup machine and came with a reusable filter. It seemed a sensible choice. Without further ado, the new machine was set up and put into service. We were saved. There would be coffee.

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We are a coffee-loving family. Coffee is the start of the day. No coffee? No way! The household went into emergency mode.

Within 48 hours of getting the new coffee machine, we all began to lose our taste for coffee. No one wanted a second cup. We weren’t even finishing the first cup. A 12-cup machine was previously not big enough for all of us and we had to make a second batch. Now, one pot was more than adequate. We had leftover coffee.

One morning, Cherrie said she thought maybe she’d like some tea. Garry decided he didn’t really need coffee and I didn’t want any either.

Suddenly, I knew. It had to be the coffee machine. Until we’d gotten the Black and Decker, everyone loved coffee. A week later, no one was interested. Cherrie wanted tea? Cherrie?

I sent Garry out with instructions to come back with a Mr. Coffee. It may not be the best machine on the market, but it makes consistently good coffee.

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Out went the Black and Decker, in came Mr. Coffee … and coffee was back. I eventually surmised that the Black and Decker fed the water through the grounds too fast to produce the right flavor … and there was something weird about that metal basket (we went back to paper filters). Also, the water was the wrong temperature.

The years have come and gone and we are one more Mr. Coffee down the road.

We are happy. There is coffee. It is good and hot. It is the smell and taste of morning, the one single thing I can’t imagine giving up. Take away everything, but do not take away my coffee. Or Mr. Coffee. When you have a good thing going, you don’t mess with it.

Mr. Coffee. Accept no substitute.

TIS THE SEASON

This is the “giving season.” Not only does Christmas make many people feel they should give whatever they can afford to those less fortunate, but it is the end of the year. If you are going to donate money as a tax deduction, now is the time.

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Giving is good and worthy, but be careful to whom you donate. There are a huge number of charity scams, some legal, many not. They call on the phone, they send emails. They may solicit you on the street. What’s the real story?


I got a call a couple of months ago from a group supposedly collecting money to help women who have breast cancer. Specifically, this group purports to help woman by giving them money to cover the not-inconsiderable expenses connected with cancer. Any cancer, but breast cancer is currently in vogue. I ought to be on a list somewhere. Probably several lists given the breadth and diversity of my physical issues.

“Our goal,” said the collector, “is to assist women with breast cancer who are financially struggling.”

I asked her if she was offering to give me money or asking me to give them money. Because if she was asking me to give them money, she was calling the wrong woman. But if she was offering to help me out, I would be very grateful for any assistance.

Fake breasts

Nice tee-shirt. No part of the price went to charity, no matter what it says

She seemed confused by my question, so I explained that I am a breast cancer victim. I’m in persistent financial straits, so I should be exactly the type of individual for whom her organization is collecting funds. So, if the goal is to help woman with cancer who need money and they’re offering to give me some, I’d be delighted to give them my address so they could send a check. They already have my phone number. I’d be expecting your check. Not.

She told me to have a good day and hung up.

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So — for whom are they collecting the money? No one ever called to find out if I need help. She did insist they were collecting money for women just like me. I was obviously not on their “to be helped” list — and I’ve never heard of the organization.

No doubt they will use the money they raise to raise more money. Which they will use to line their own pockets. No one will ever benefit from it except the fundraisers. Another scam.

"Direct cash" is what they really give to someone other than themselves.

“Direct cash aid” is what really goes to support causes — about 5%.

Which is how these things seem to work. Have you ever heard of anyone actually getting any help from one of these groups? Ever? Even a rumor of someone who knew someone who heard about someone who was helped by such an organization? I haven’t. Not one person anywhere ever.

Tee shirts: I have a few breast cancer tee shirts. Some were gifts. One I bought because it made me laugh. Do not assume that any part of the money these transactions goes to charity. It doesn’t. Tee shirt makers’ personal bank accounts are the only cause they support.


I got a note from a friend of mine recently. She asked:

This may seem irrational, but …

I have some bitter feelings about ACS, left over from when my Mom was dying of multiple myeloma (think Geraldine Ferraro) back in the early 1980s, when there really was no treatment for that devastating disease. As her caretaker (and single parent, low-income but employed), I was feeling desperate and alone one time so I called the local chapter. The person who answered the phone day was curt and dismissive, telling me that the only way they could help was by giving us rolled bandages — which my Mom didn’t need. I like to think it would be different now, but ever since that phone call (just a fluke?) I have taken a dim view of ACS.

Not surprisingly, The Charity Navigator, a group that rates charities and how much of the money they collect actually gets to someone other than themselves, rates the American Cancer Society poorly. Two out of five stars.

I answered her as follows (this is my actual answer, with identifying information omitted for privacy reasons):

To the best of my knowledge, this is not an organization that has ever helped anyone. Ever. I called them when Jeff had cancer and they were just as helpful to me as they were to you. This is one of many “charitable organizations” that seems to exist to collect funds so they can collect more funds. And pay their CEO a princely salary (more than a million dollars annually). As far as I’m concerned, they’re a legal scam. They don’t help anyone.

Exactly who does get the money? Good question. Worth asking. When you get fundraising calls, it’s normal to want to give, if you can. After all, it’s for charity. Isn’t it?

worst charities

Most of the money ends up supporting the fundraisers.

Maybe. Maybe not. Before you open your checkbook, find out who they help. Where the money goes. Many “legitimate” groups — the bigger and better known especially — give almost nothing to help anyone or anything except themselves.

Typically, the percentage that goes to “serving those in need” is less than 5% of the total funds collected. If you gave $10, that’s 50 cents. Not much of a return on your investment. This doesn’t take into account the actual scams of which there are a frightening and rapidly growing number.

If you give to one of them, you have thrown your money away. For nothing and no one. How people can use other people’s suffering to enrich themselves? I don’t know, but, it’s done all the time. By many people.

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A word about the Salvation Army. Although they do some good stuff, they charge high prices for donated items. I have seen clothing I donated tagged at prices so high that I couldn’t afford to buy it back. I no longer donate to them. Instead, I find groups who give clothing and other necessities to those who need it — free. Our church collects coats and other warm clothing, as do most churches in cold winter areas. There is also Planet World and other groups.

A FEW GOOD CHOICES

Catholic Charities of USA and associated local chapters support food pantries, free clinics, emergency programs for anyone who needs help regardless of religious affiliation. The American Kennel Club helps dogs, all kinds of dogs, purebred and not. The ACLU (American Civil Liberties Union) provides legal assistance. Whether or not the work they do is something you choose to support is a different issue, but they do live up to their charter.

On the negative side, there’s the United Fund which exists to collect money to support its efforts to collect money. PETA doesn’t give anything to anyone except maybe each other. The American Breast Cancer Association (zero out of four stars) is a legal scam as is the Breast Cancer Prevention Fund  (one star) and there are many more.

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Your local church, synagogue, or mosque is a far better investment. Local religious groups do a lot of good in their communities, quietly, without fanfare. Usually behind the scenes and for free.

Direct charity is always a great choice. If you have a friends who having a hard time, help them. At least you will know your money went where it’s genuinely needed.

Bigger is not necessarily better, especially when you’re talking about charities. Big publicity campaigns mean that big money is being spent and not on helping people or doing research.

Most national charities have local chapters — and they do the real work. Local chapters need to raise funds themselves to continue their work because the national groups keeps the money for their own purposes — usually raising more money and paying high salaries to executives.

Donate to local groups rather than the national organizations.

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Finally, lots of charities have similar names. You need to know the precise legal name of the group. Scams and legitimate groups sound the same when spoken quickly by a solicitor on the phone. Don’t donate to street collectors or telephone solicitors unless you personally know the group and what they do.

Ask for literature. If they don’t have any, it’s a scam. Even the smallest groups have a leaflet of some kind. Do not assume a website means anything. You know how easy it is to create a website … fake address and all.

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Ask questions. Do your homework. For many of us, finding a little money to donate to anyone is a stretch, so before you give, know to whom it’s going.

Otherwise — I’m serious about this — give the money to someone who is struggling. At least you will know your gift helped someone. It won’t be tax-deductible, but that’s not the point, is it?