The Stairlift: A Tale Of Regret

“Will you come up the stairs a step or two behind me?” Uzma asked me one day in early September 2018 as we were getting ready to go to bed. Various chemotherapy regimens had damaged her peripheral nerves. She was having difficulty feeling the floor and just knowing where her foot was without looking at it. Walking steadily without support was becoming an increasing challenge. By then this had been going for some time. It started out as an off-and-on problem, but for the past three or four months, it was more often on than off. “I just don’t feel safe going up by myself today,” she explained. “Of course,” I said, and walked one step behind her as she went up the stairs. The next morning I walked a step ahead of her as she came down for the day.

I didn’t know it then, but that — me climbing up the stairs one step behind Uzma, and one step ahead of her when coming down — was soon to become a daily routine. It was as if we were finally doing the phere (rounds around the fire) that we had missed when we skipped our religious wedding ceremonies. Only the fire was one lit by cancer, and it was consuming Uzma’s body. Gradually, by late October, weakness and overwhelming fatigue started to compound the balance problems. She spoke about needing a nap after a shower. Then one day, she asked, “Could you give my bottom just a little push as I go up each step?” She could walk by herself, taking support from a wall, on flat ground. But going up and down steps was another matter. I started wondering if I should look into stairlifts.

* * *

Mental health professionals will recognize “Woulda, Coulda, shoulda!” as the words that haunt people whose lives are stalked by the twin demons of guilt and regret. These three words, obsessed over too much, lead a mind down the labyrinthine rabbit hole of soul-numbing depression and anxiety.  At least as it relates to Uzma and being there for her, the two demons don’t quite barge into my memories and dreams. But I do see their shadows, sometimes. Those shadows led to my posts about Costs of Cancer, and to my understanding of how and why a referral to hospice was delayed.

The differences of faith and national origin we overcame to be together made our love unusual. But none of what I am about to describe below was out of the ordinary. Hundreds of thousands of people around the world are caregivers for their loved ones with cancer. They do all that I did with Uzma, and then some. They do it without fanfare and without recognition. I don’t seek a medal either.

* * *

Once Uzma was told her cancer was stage 4, it was as if she had been thrown off the train we had been riding together. She was put on a different train from her family. It ran on a track next to ours. We kept pace together. We just knew that her track was gonna end before ours. When you riding a train, you can’t really see where the track ends even if you know it will.  Like many in our situation, despite being on separate trains, we held hands, stayed up together, spoke of our dreams and our fears. We tried to help each other as much as we could. I kept helping her with an increasing number of daily tasks of self-care as her train slowed. She kept helping me through life’s problems to the very end.

Living life fully with Uzma even knowing our journeys were separate is what saves me from the guilt that some feel after a loved one is no more. Guilt is uppercase “Woulda, Coulda, Shoulda.” We can avoid guilt by how we live and treat each other when we together. Regret is another story. It is inevitably intertwined with loss. Its focus, degree, and intensity may vary, but where there is grief, there’s regret. Once Uzma’s cancer had spread beyond the breast and its lymph nodes, her end was written. Nothing could change that fate. But I do think at times, if I had done this or done that, perhaps her final days could have been more comfortable. Regret is lowercase “woulda, coulda, shoulda.”

* * *

In August of her final year with us, Uzma confided one day, “I too disabled to do anything with you or the kids. I am not sure there’s any point in continuing treatment.” She was in two minds about continuing treatment. She felt tired, exhausted. The cancer treatment toolbox is full of things to poison and burn the cells that are doing their own thing, not sticking to the plan. Though these treatments also harm normal cells — hence the side-effects — patients willingly take them.

They take them because of hope. They think, “So what if I will have some temporary or lasting damage. If this treatment ends up working, at least I will be free of cancer.” But when the errant cells turn skilled tricksters, oncologists are left playing whac-a-mole with their treatments. The patient suffers a lot of hits on her body while the mole that is cancer seems none the worse for it.

The first drug Uzma took after her cancer came back kept it at bay for nine months. After that, nothing worked for more than 3-4 months. Fantasies of N.E.D. (no evidence of disease) status were vanishing illusions. For some people, successive treatments manage to work for several months or rarely, even a couple of years at a time. Uzma wasn’t so lucky. Uzma was tired of the hits her body had taken without any benefit.

When she said she was in two minds about continuing treatment, I said, “You have suffered a lot. If you stop treatment, I will support that decision. I won’t think you love our kids or me any less just because you stop treatment.” It seems like the right thing to have said at that moment.

But I think it would have been better to say, “I love you. You’ve suffered a lot. You think you have to keep going, to take that one more chance that our kids won’t grow up motherless. But you are taking a beating. It might be time to be a bit selfish and choose comfort over another treatment.” One might think, what’s the difference? The first way of saying implies that the decision to quit treatment is hers, and I am there just for support. The second way is one where I help her think and feel through this decision.

I thought of saying something like the second way, but then, despite all the love we had nurtured over the years,  or maybe because of it, I bit my tongue. I thought, what if she sees that as me picking a side against hope? What if she sees that this isn’t just her husband saying this but someone who also happens to be a physician? Does the physician in him see no hope at all? Is it that bad? Am I so far gone?

* * *

The reason I feel regret but not guilt about this is that I still believe that oncologists should be responsible for bringing up hospice in a timely manner. Patients and families don’t know a lot about hospice, about it can help. They think of it as only as a death sentence. The fact is the oncologists know that the death sentence is stage 4 cancer whose odds of responding in a timely manner keep going down with each successive treatment failure. An intense cloud of emotions envelopes patients and families dealing with terminal cancer. They can’t see things as clearly as their doctors can.

Uzma made some physical therapy (PT) appointments in October, hoping that PT will help her gain her strength and balance back. However, her unrelenting cancer kept grinding her down, and the resultant weakness meant she could never keep any of those appointments. Between September and December, medicines caused enough bone-marrow suppression that she needed multiple blood transfusions. Though I can tell the various ways in which both of us were clear-eyed about her prognosis, there are also ways in which we didn’t want to buy it.

* * *

Even before Uzma’s oncologist finally stopped treatment and referred her to hospice, the writing was on the wall. In early December, I started calling business outfits that installed stairlifts. Because it was the holiday season, everything took longer. Visits to take measurements took longer to schedule. Quotes took longer. Actually scheduling the installation took longer.

The emotionally toughest decision around the stairlift was whether to rent or buy. By this time, Uzma was too tired and drained all the time to participate in any household decision. To rent or buy had to be my decision alone. The total rent for about eight months was to be the same as the cost of buying outright. What was more important — a rational decision about money, or letting Uzma know that I thought there was still hope?

Part of me just wanted to buy. Part of me wished health insurance covered stairlifts. Then the insurance overlords would make the decision. And I would accept the decision while blaming them for limiting our choice. But stairlifts are home modifications, not medical equipment. So, no insurance company knight in shining armor. I decided to rent it. At least that decision made choosing the company I went with easier; of the ones I got quotes from, only one rented them. I dreaded what I would say if Uzma asked if we bought or rented the stairlift. Would I tell her the truth? She always wanted to wrestle with the truth, no matter how difficult the match. Or would I speak a white lie that would not hurt her? To this day, I feel that dread. But Uzma didn’t ask, and I didn’t tell.

The stairlift eventually came in late December. Immediately, I saw how much easier it made things for Uzma. She no longer felt nervous going up or down the stairs. To this day, I regret not having pursued the matter of the stairlift when I first thought of it in October.

* * *

Grief is a mixed bag both when death comes unexpectedly and when it is long and drawn-out. In the first kind, it’s as if a nuclear winter falls over a family. The old world goes dark in the snap of a finger. A sudden loss is incredibly tough on the grieving; it has the potential to complicate mourning with a mountain of regret.

In the gradual type of loss, death first casts a shadow on a family. The shadow gets imperceptibly longer each day. Sometimes years and months pass with barely noticeable changes. Then just towards the evening of the loved one’s life, the shadow seems to lengthen so quickly that it feels like only seconds. The evening mist that one ould see in the distance is suddenly upon us. And just like that, our loved one is gone.  The speed of the final stages of dying creates opportunities for regrets even in this kind of loss. The only hope is that the regrets are few and fleeting.

Halloween

Halloween has come and gone. It is my favorite festival in America. Grown-ups get to be kids, and kids get to be themselves. No questions asked. They go door to door, and even the most reserved of people open their doors to them today.

Yet Halloween will always also bring sadness because of what I vividly remember thinking last year.

Uzma used to love Halloween. Mainly for the joy on the faces of all kids — not just our own. She would always go to our kids’ Halloween event in school. She looked forward to accompanying the kids when they went trick or treating. Last year she felt too weak and tired to go.

After being out for one hour with the kids last year, I remember thinking, “Two years ago, Uzma was with our kids the entire time. Last year she went for only about thirty minutes and then wanted to go home. This year she couldn’t come at all. I wonder…” I didn’t want to finish that thought. But I knew what I feared. She made it to 92 days after that.

This Halloween, I could find only one of our Halloween decorations. Though I was the one who put all of them away last year, it was my first year doing that. I couldn’t even find the kids trick-or-treating pails. It didn’t turn into a disaster because Gauri agreed to take a cloth bag, and Shuja decided to skip trick-or-treating altogether.

It snowed three inches on Halloween. It was cold, wet, and slippery. Shuja said, “I don’t want to be miserable out there. I would rather not go.” We barely had ten kids come to our house. Typically, the homes in our neighborhood, with its arrangement of smallish houses with small yards, attracts tons of kids. But I guess snow-covered jack-o-lanterns and Halloween decorations are uninviting.

The tradition in many Indian families is to not participate in festivals and celebrations until after the first anniversary of a loved one’s death. The kids look forward to Halloween so much that I had decided that we will make it an exception. But it felt today as if the gods didn’t want us to celebrate too much either. They were the same gods that made the night of Uzma’s passing the coldest night in Chicago in decades. I know I shouldn’t personalize a natural event, but that’s how it felt today.

Halloween also happens to be the last day of Breast Cancer Awareness month in the US. Last year, it was also the eve of Uzma’s book launch. Uzma deliberately chose Nov 1 to launch her book. She said, “Breast cancer awareness doesn’t end on Oct 31. For us, survivors and our families, it is a hard daily reality. I want to launch my book outside of the awareness month.”

She would have loved to see the incredible reviews her book gets. She would have loved to go on tour to promote it. She would have been impressive at it.

Halloween was when I first realized that she would not get to do any of that.

It will always be a fun festival. And a bittersweet one. Forever.

 

Uzma Educates About Stage 4 Breast Cancer: Video

[This video was a stand-alone Facebook post of Uzma’s in 2017 on October 13th, Metastatic Breast Cancer Day. Read this to understand my approach to turning some of Uzma’s Facebook posts into blog posts. Below the video, I have included Uzma’s message, for which I took a transcript of the video and edited and formatted it for ease of reading and clarity. Watch the video and share Uzma’s message about metastatic breast cancer.]

Hi! My name is Uzma, for those who don’t know me. I am making this video to talk about metastatic breast cancer day, which is today, October 13th. And the reason I am choosing to make this video is to spread more awareness about metastatic breast cancer.
First of all, let me explain what metastatic breast cancer is. When people are diagnosed with breast cancer, the name means having cancer in the breast. Sometimes breast cancer goes into the lymph nodes in the armpit called the axillary lymph nodes. Based on that, cancer is given a stage.

Metastatic breast cancer is when cancer has left the breast and the lymph nodes in the armpit and has spread to other organs in the body. Breast cancer, as a disease, tends to spread to the liver, lungs, bones, or brain. Those are the typical four places where breast cancer cells tend to go.

The other name for metastatic breast cancer is secondary breast cancer or stage 4 breast cancer. With metastatic disease, the treatment goals change. The oncologists stop trying to cure cancer. Now they just want to keep it under control and manageable.

Once somebody has been diagnosed with metastatic breast cancer, they tend to stay in treatment. The only exceptions are people who have done incredibly well on treatments for 5, maybe 10 years. Then their doctors may decide that they are in remission, stop treatment, and continue ongoing monitoring.

Since there is no cure for stage 4 breast cancer, most people stay in treatment as long as they are alive. Treatment can involve oral chemotherapy pills, targeted therapies, or chemotherapy infusions. So in some way, shape, or form, the person is consistently in treatment.

The other thing is because doctors know that cancer is present, there are ongoing scans. A person goes through scans every three months. Scans may include CT scans, bone scans, PET scans, or some combination of these. The oncologists really want to see is the cancer is growing — the term they use is “progression.” Or whether it is getting smaller — they call it “regression.” Based on whether there is progression or regression, the doctors determine whether the person’s treatment is working.

The typical course of metastatic breast cancer is that whatever treatment is started will stop working at some point. It could be nine years, it could be one year, or it could be nine months. Then the patient gets transitioned to the second line of treatment.

Cancer mutates. Because it is part of the pathology of the cancer cell to change and mutate, it is tough for one treatment to work for a really long time. Now, there are metastatic breast cancer survivors who have lived 15, 17, even 20 years. There’s actually a study going on in UW-Madison where they are trying to study these super-responders to see precisely what is different about them that stay alive for so long.

The median survivor for metastatic breast cancer is three years. That is half of the patients are dead by 36 months. But there is significant variation in survival based on where the metastatic lesion is and how the disease is responding to a particular treatment. People who have just bone metastases tend to survive much longer than people who have soft-tissue metastases. By soft-tissue, I mean lung, liver, or brain.

Essentially, metastatic breast cancer is an incurable, terminal disease. And there are ways to slow down the progression. But on a day-to-day basis, knowing that you live with cancer in your body is very hard. It is a daily exercise in patience and gratitude in taking care of yourself, in reframing how you think about life. Because living with a diagnosis you know is eventually going to kill you is not a very pleasant thing.

Also, people who have metastatic breast cancer cope with fatigue. They deal with multiple side-effects. As you can see, I have got a little hair growing. It is because I am on a particular medication that doesn’t cause hair loss. But my scans may show progression, and then I will get transitioned back to chemotherapy. And I may not have hair again. So having hair or not having hair has nothing to do with whether a person is doing better or not. It just means that they are on a particular kind of treatment that allows a person to have hair.

For example, when I was on Ibrance for nine months, I had my hair. I didn’t lose any hair because Ibrance or palbociclib is a very targeted treatment, and it doesn’t cause hair loss. Then I ended up with IV infusion chemotherapy with Taxotere. That causes hair loss. So I had lost my hair again. Now I am on Xeloda, which is oral chemotherapy. And I get to keep my hair or at least grow them a little bit.

The reason I am talking about this is that people who don’t have cancer really don’t want to hear about terrible cancers. And people who have had breast cancer don’t want to think about becoming metastatic because it is terrifying. The return of cancer is emotionally stressful, scary, and devasting, especially to a young person.

Nevertheless, all of us must come together to advocate for more research funding for metastatic breast cancer. When there is a cure for metastatic breast cancer, it will no longer be scary. It is not the fault of the cancer patient if her cancer returns or spreads to multiple organs. It can happen to anybody, irrespective of the initial stage. Patients do everything their oncologists tell them to do, and still their cancer returns. It is the nature of cancer to mutate and recur.

The most famous celebrity example is that of Olivia Newton-John, whose cancer recurred after 20 years. Some cancers are very slow-growing and may recur after many, many years. Or some cancers respond to treatment completely and never come back.

Today, on Metastatic Breast Cancer Day, it is important for us to learn about metastatic breast cancer so that we can join together and push for research into cures for stage 4 cancer, or at least into treatments that can stop the progression of metastatic cancer.

I have friends whose cancers are not responding to treatment, and they are now transitioning to palliative care in hospice. It is tough because, in terms of statistics, we lose 40,000 women every year to metastatic breast cancer. That is, 113 women lost every day to breast cancer. That’s a significant number. As a community, we need to do better.

I appreciate you listening to me and learning a few things about breast cancer.

Thank you so much.

 

Cut-resistant Gloves And Cancer

Some years ago, I saw an advertisement for “NoCry” cut-resistant gloves. The picture in the ad showed two hands wearing the gloves and a large kitchen knife being pulled across one palm (see bottom of page). At that time, I thought, “No one pulls a kitchen knife across one’s palm like that!” I wondered who would genuinely need these gloves. They will never pay for themselves except for people who accidentally cut themselves all the time. Then, two years ago, I bought them.

Over the course of her multiple chemotherapy regimens, especially since her cancer returned in 2016, Uzma developed nerve damage known as chemotherapy-induced peripheral neuropathy (CIPN). CIPN is a common side-effect of many cancer medications. One scientific study found that almost 70% of cancer patients have CIPN one month after chemotherapy ends. For many, the symptoms subside with time since treatment, but the same study found that almost one-third of cancer patients still have CIPN six months out of treatment.

There isn’t one particular explanation for CIPN. Science tells us that there many roads to this kind of nerve-damage with cancer treatment. Some mechanisms are more relevant to some drugs, while others play a role in CIPN caused by other medications. We know that smoking, pre-existing neuropathy (from diseases such as diabetes), and impaired kidney function increase the risk of CIPN. In most cases, large nerve fibers suffer damage, leading to a “glove and stocking” pattern of symptoms. That is, the symptoms are most significant in the areas of the body that gloves and stockings would cover.

These symptoms commonly include varying degrees of burning pain, numbness, tingling, itching, and other unusual sensations. They may also include weakness, and when involving the feet, problems with balance. Changes in heart rate, diarrhea, or bowel movement patterns can occur in case of damage to nerves for automatic functions.

By the final several months of Uzma’s life, she had constant burning pain, tingling, and numbness in the glove and stocking pattern. By mid-2018, the problems with dulled sensation had become strong enough that she stopped driving.  She felt she couldn’t be sure about applying the right amount of pressure on the gas or brake pedals. By then, problems with weakness and balance also became significant enough that she had a couple of falls on the street. From that point on, she needed assistance when walking, especially outside the home. Eventually, in the house too.

By the time Uzma left us, we were renting a stairlift and owned all sorts of equipment including, suction bathroom handrails, a shower stool, a toilet seat riser, toilet seat handrails, a cane, a rollator, and a wheelchair. The goal was to help her maintain as much independence as possible.

The first tool we purchased, way back in 2017, to help with CIPN-related disability was a pair of cut-resistant gloves. You see, long before, burning pain, weakness, and problems with balance, Uzma had started to have numbness in her fingertips. It made her frustrated at needing help with one of the things she loved to do — cook. The numbness caused her to feel afraid to use knives. Though she would ask me for help, she hated that she couldn’t just start food prep whenever she wanted to and had to rely on someone to help. The cut-resistant gloves fixed that problem and gave her confidence back. She could ask for help if she wanted, but she didn’t have to ask for help.

I was reminded of this while reading this piece in the online magazine Vox:

vox-article-on-useless-products

As the article rightly points out the utility of a banana-slicer, “Imagine being unable to slice a banana over your morning cereal because your hands are paralyzed or joint contractures make it hard to grip both the banana and the knife.” It then makes us think about the kinds of impairments that for which ‘useless’ tools such as a sock-slider and yolk separator might be helpful.

I admit that commercials for these products are sometimes too funny. They often show people making exaggerated movements while doing things like separating egg yolks or putting on socks. The exaggerated movements lead to spoiled eggs or falls. Then they present the relevant product as the solution. Maybe those people in the commercials can’t do things the usual way. Perhaps they have a disability that is not evident to the casual observer. I think the ads may have to be that way. While the product may have been developed for a niche group of people, limiting one’s sales to that niche will never get the profits that a broad market will.

It’s easy for us to think walkers and canes help with disabilities because the impairments for which they help are usually evident to us. Let’s pause once in a while and think about the products that help with not-so-obvious difficulties.

And let’s give a thought to cancer patients suffering from nerve-related pain, numbness, and weakness. Let’s ask our loved ones with cancer about it as often they won’t complain about this. They think this is the least of their problems. Even if that were true, neuropathy is a problem with real consequences and risks for them.

cut-resistant-glovesbanana-slicersock-slider

How Long Should Cancer Drugs Stay Expensive

In 2016, my wife Uzma learned that her breast cancer had returned. It had spread to her liver. The first treatment that she received for her stage 4 breast cancer was Ibrance (palbociclib). It’s a pill you take by mouth. She didn’t have to go to the clinic for infusions. As her oncologist said, it had few side-effects. She didn’t lose her hair, though it did thin a bit. At that time Ibrance cost just over $10,000 a month out-of-pocket. We were grateful to have good insurance; our copay was ‘only’ $3,000 a month. Cancer drugs are expensive, in case you didn’t know.

The pharmaceutical industry and health economics experts tell us that it is expensive to research cancer drugs. They say that accurate estimates of R&D (research and development) costs of cancer drugs must include the cost of developing, researching and studying all the compounds that show early promise but ultimately fail in studies and don’t make it market.

In Jan 2019 a study was published in JAMA that is the first one to examine the ROI (return on investment) for cancer drugs in a systematic way. It examines the ROI for 99 cancer drugs approved by the FDA between 1989 and 2017.

cancer-drugs-roi

The key findings of the study are:

  • For each $1 spent on R&D for cancer medicines, Pharma earned between $3.30 and $55.10 with the median being $14.50.
  • The companies earned the full cost of R&D between 2 and 10 years of FDA-approval, with the median being 5 years.

Going by these findings, it would appear that after 5 years, there is no good reason for half of all drugs to be as expensive as they are. And the drug manufacturers would fully recover their cost of R&D and then some if they cut prices by half 10 years after FDA-approval.

On Thoughtful Giving For Breast Cancer

My wife Uzma died of breast cancer eight months ago. It was stage 4 breast cancer, also known as metastatic breast cancer (MBC), that took her.

According to the latest data from the American Cancer Society, over 250,000 American women will be diagnosed with breast cancer in 2019, and over 40,000 will be diagnosed with MBC. Less than 10% of women with breast cancer have MBC at initial diagnosis, but eventually up to a third of women with early-stage breast cancer will go on to have MBC. 100% of deaths due to breast cancer are due to MBC. And almost all women with MBC will die of MBC.

Normally functioning cells in our body have two key features: First, they don’t keep reproducing (make copies of themselves) indefinitely. Second, they stick to their own kind. Liver cells stick to the liver. Lung cells remain in the lung. Breast cells remain in the breast. And so on.

Cancer happens when a genetic glitch in a cell removes the restraint on reproduction. One cell begins reproducing without paying any heed to the need for more clones of itself — reproducing without restriction results in the growth of a tumor.  Cancer becomes stage 4 when another genetic glitch causes cancer cells to lose the stickiness to their own kind. It’s as if they have become adventurous, straying far and away from their native organs. Cells from the breast, for instance, think nothing of making a home in the liver. Cells from the kidney may decide to dwell in the lungs.

Most cancer research aims to stop cells from reproducing without limits. Relatively little goes towards preventing cells from losing their stickiness. Most stage 4 cancer patients, including MBC patients, receive one trial after another of chemotherapy drugs developed to prevent tumors from growing in size,

Less than 5% of the national research funding goes to MBC. Let that sink in. Almost one-third of women with early-stage breast cancer go on to have MBC. All breast cancer deaths are due to MBC.  But less than 5% of research funding goes to figuring out how to stop cancer from spreading and from killing our mothers, daughters, sisters, and wives.

Awareness campaigns are everywhere during October — Breast Cancer Awareness Month. Pink ribbons are on a range of products. Pink banners are in a host of stores. The message everywhere is, “Do your mammograms!” There is not the same volume or intensity to the message that one in five screening mammograms are false negatives, i.e., they fail to detect cancer. Younger women and those with dense breasts are at higher risk of false-negative mammograms. Uzma was one of those women. She had several annual negative mammograms, the last one of which was about three weeks before she found a lymph node in her armpit.

The other message that doesn’t get highlighted during Pinktober is that almost one-third of women whose cancer is detected by mammograms will go on have stage 4 breast cancer. And that right now we don’t know how to stop that.

As we open our wallets this month to give to charities that fight breast cancer, let’s give some thought to whether our money flows consistent with our values and preferences. Different organizations see their missions differently and spend accordingly. Before donating, it is not a bad idea to check out an overview of the charity at Charity Navigator. I compiled the tables below from data easily available on that website.

Program Expense Distribution of Selected Breast Cancer Charities*

Metavivor, a relatively new charity, not as big as the other two in the tables above. However, its program spending is growing the most rapidly. And its spending is exclusively focused on MBC. Metavivor believes that 30% of funds given to breast cancer organizations should be dedicated to MBC. Remarkably, of the three charities, it spends the least amount of money to raise more money — less than a penny to raise every dollar. BCRF, while not exclusively focused on MBC, spends 100% of its program funds on research. Its administrative expense, as a percentage of its budget, is the lowest of the three charities above. It spends eight cents to raise every dollar. In 2017, Uzma modeled for an Ulta Beauty campaign to raise money for BCRF.

Komen, which needs no introduction, is a fundraising juggernaut. Of the three charities above, it spends the highest proportion of its budget on administration. It also spends a lot of money to raise more money — 14 cents to raise every dollar. Fundraising expenses are 12.5% of its total spending; they are 8.7% and 1.1% of expenditures at BCRF and Metavivor, respectively. Of the three organizations, as a percentage of program expenses, Komen spends the least on research. Charity Navigator gives a Charity Navigator Score to all charities based on a combination of financial and accountability & transparency measures. Komen’s score is the lowest of the three charities.

Is one of these three charities more worthy of our money than the others? That’s for each of us to decide based on what is most important to us. Is it more important to us that all of our money goes to research? Do we want more of our hard-earned cash to go towards making more women aware of the importance of screening? Or do we prefer that more of it go to research.? Do we want it to go research focused on stage 4? Do we care how much our cash a charity uses for administration and fundraising?

The answers to each of these questions may well be different for each of us. We don’t need to limit ourselves to the three charities in the table above. A search on Charity Navigator will reveal other charities specific to any other cause dear to any of us. All we need to do is to make sure we review that information and give our money to the charities that most match our values and preferences.

 

 

A Cancer Widower’s Call To A Newly Diagnosed Friend

Running Into Worry

While standing in the ordering line of a locally famous ice cream shop, I ran into an acquaintance. She pulls me aside and whispers, “I have bad news.” Her face has lost all color. My first thought is that it must be about her parents. Like my parents, they are at an age at which lousy news would shock only the immediate family. Everyone else would say platitudes like, “She had a full life,” or “He got to see all his kids settled.” But this isn’t about her parents. “I just got diagnosed with breast cancer,” she clarifies.

“I am so sorry,” I say while attempting to comfort her. My life with Uzma, from first meeting her, making good memories and not so good ones, and to her death from cancer flashes before my eyes in an instant. The terrified woman says, “All I can think of is Uzma.” Her son and husband, standing a step or two behind her look frozen. All I can say there is that I am sorry for what she is going through. Observing that the noisy ice cream shop was not the right place to have this conversation, I take her number down and promise to talk to her another time.

What can a person in my shoes say to a person in her shoes? Cancer took my wife. One of the world’s top breast cancer specialists treated her at a premier university hospital. Uzma was one of the best patients a doctor could ask for — well-informed, asking many questions, but then taking every dose of every medicine prescribed unless the doctors told her to hold it. She added complementary approaches to standard treatment to improve her life. She practiced gratitude and a positive attitude. Still, she died. What meaningful thing can I say to any woman newly diagnosed with breast cancer?

Platitudes Don’t Give Hope

My first instinct is to say something that gives hope. But I remember how hollow and empty comments such as “everything will be alright” used to sound when Uzma was first diagnosed with cancer. “How do they know when even our doctors don’t know?” Uzma and I would ask each other. Everything may be alright in the long run. Ultimately no one is indispensable. Eventually, people learn to live without loved ones who die. But that’s not the goal of the people doling out hollow reassurance. They are trying to instill hope in the near-term. Towards that end, such comments were a big miss with us.

When the shock of those three words, “You have cancer” hits, it feels as if the very ground under the entire family’s feet has vanished. A free-fall begins — scenes from one’s past whiz by with a feeling of unreality. Visions of alternate futures appear and disappear with a sense of immense sadness. You realize that some of those futures will never be. Sometimes, it feels as if the falling will never end. At that stage, everything seems surreal. All because of three words.

How can any hollow platitude give real hope at that time? Some people have a hunch that this might be the case. They try to give their superficially hopeful statements a shot in the arm by first trying to learn more about the victim’s cancer, their diagnosis, and treatment. They pepper the patient or her family with questions — what, where, when, why, and how? It usually backfires. No matter how much detail we learn about how the person found their cancer, what the test results show and what the doctor said, none of it changes the fact that uncertainty haunts the home and the mind of the newly diagnosed.

The Phone Call

I prepare for my phone call by practicing saying this, “Cancer sucks! I am sorry you have to deal with this. There is nothing I can say or do that will make you feel less nervous right now. But I do want you to know that Uzma’s cancer story is only one type of breast cancer story out. There are others out there, in many of which recurrence does not follow remission. No one can tell you today whether or not your cancer journey will ape hers. The best thing you can do for yourself right now is to make sure you have the right doctors on your side — doctors who are right because of their competence and because you trust them. Then let them guide you. Let me know if there’s anything I can do to help you on that front.”

I know before the phone call that this will be a dialogue, not my monologue. But practicing what I wanted to say ensured that I told everything I wanted to say. More importantly, it will lower the odds of anxiety making me blurt out something insensitive. I make the call. I don’t ask a single question about the diagnostic process, the treatment recommended, the test results, and all the other information to which I had no right. She shares some of this information on her own.

That part of the conversation is followed by the only question I want to her, “How are you sleeping?” She tells me she is having a hard time since the diagnosis. I recall our days after Uzma’s diagnosis. I remember Uzma deciding, after a couple of weeks of poor sleep, that she couldn’t afford to go on like that. She told her doctor, “I need rest. I have a lot of information to absorb right now, a lot of challenging decisions to make. I can’t do myself any favors by being sleep-deprived and tired all the time. Can you give me something to help me sleep?” I share this memory with our friend and urge her to consider doing the same. She replies, “I hadn’t thought of that, but it makes sense.”

Calling The Husband

Later that day, I call her husband. The first part of that conversation is similar to the first part of the conversation with his wife. I empathize with the burden placed on their lives by cancer and the uncertainty accompanying it. I ask him if he would let me give some unsolicited advice. When he approves, I say, “This is a time when you will need all the help you can get. For a variety of reasons, most of us find it easier to help others than to ask help for ourselves. But this is a time when asking for help is the thing to do. There is no shame in it.”

I also suggest that they consider getting as much paid help as they reasonably afford. Paid help can provide predictable daily support to do things that need doing every day. Even if one is wholly preoccupied with cancer and its treatment, the dishes and clothes still need cleaning. At this moment some or all of the money one spends on vacations and entertainment is better diverted to getting paid help.

I share with him that it was not easy for us to make the shift. It’s easier to give than receive help because receiving makes us feel exposed and vulnerable. Especially when dealing with a serious illness like cancer, we also know that we may never be able to return the favor. All we may be able to do is express heartfelt gratitude. And that’s okay. We eventually grasped that even if we can’t return the favors received, we can pay it forward by helping others in our shoes.

I want to say a lot more to both of them. Ignore the avalanche of bullshit dietary advice about to head in your way, I want to say. I want to tell them about the people who will vanish from their lives during their most challenging time. And tell them of the strangers who will step up to help. There’s much, much more. But I decide against it. Just because I want to tell them all this doesn’t mean it it is the right time for them to hear it.

As I end the conversation, I find myself wishing that her cancer responds so well to treatment that she and her family will eventually look back at this time as nothing more than a bad dream.

Post-script

I don’t know if this was the best way to handle this. I used what I have learned from Uzma’s and our family’s cancer journey. There were three most important lessons that I learned about those early days of the cancer journey.  First, no matter what anyone says, the hand early days (and often later ones too) are days deep uncertainty. Second, early on, cancer patients are often tired of sharing their stories repeatedly with different healthcare professionals and family members. Sharing them with yet another person with whom sharing is not essential is not something they relish. Third, exposing one’s vulnerability by asking for help is hard but necessary to navigating cancer.

Cancer And Blogging: Why I Keep Writing Part 2

It seems having cancer puts you at higher risk for blogging, breast cancer even higher. Or perhaps with a cancer diagnosis emerges a need to talk or find an audience, a team or group to listen. The need to be heard is a pretty basic psychological need, unmet in many cases but I guess having cancer gives you some authenticity about knowing life and its ups and downs, so people will listen.

I listen, listen a lot, it’s part of my job and has now become second nature, I hear about very personal things, intimate thoughts, even thoughts that people are unwilling to admit as their own.

What makes it useful is the feeling of being heard. That someone out there understands what you are going through.

[Commentary by Dheeraj Raina: This is a previously unpublished post of Uzma’s. To read my approach to her unpublished work, read this. Uzma had left the draft of this post untitled. I see it as a complementary to another previously unpublished post Why I Keep Writing. That’s why I chose this title. Besides that my contributions to this post include fixing punctuation and making paragraphs for comfortable reading.]

The Mixed Feelings Book Sale

Even before her own breast cancer diagnosis, my wife Uzma began having mixed feelings about Breast Cancer Awareness Month. Those feelings got even more mixed once her cancer came back and became stage 4. “I don’t mind the fundraising,” she explained, “But I sort of think that much more needs to be spent on funding research into treatment than we are doing now.”

She agreed that awareness campaigns are important to keep educating women about the importance of screening mammograms. According to the CDC, more than one-third of women over the age of 40 report not having a mammogram in the past two years. The message of journal articles like this one, published after Uzma’s death, must be summarized in simple language for all women. Women with dense breasts need education on the poor value of mammogram screening for them. Some women need sensitive education to help them overcome their anxious avoidance of breast cancer screening.

In 2011, two years before her cancer diagnosis, Uzma discovered that the charity then known as Susan G. Komen for the Cure was only spending 15% of its program funds on breast cancer research. Since then the charity has dropped the phrase “for the Cure” from its name. However, the non-profit and its affiliates still host hundreds of “Race for the Cure” events every year. Komen has since increased its funding on research to almost 29% of its program funds. Uzma believed that as the 800-lb giant in the breast cancer charity universe, Komen has a responsibility to spend much, much more to fund treatment research.

Since then we found other organizations, smaller than Komen, that spend a greater part of their program expenses on research. Breast Cancer Research Foundation spend 100% of its program funds on research. Metavivor, a much smaller charity, spends almost 90% of its program funds on research focused on stage 4 breast cancer. Komen’s size gives it an outsize impact. For that reason alone, it remains an organization worthy of our support. But those of us who want more of our support to go towards research must explore other options.

Those who want to keep funding advocacy and education ought to consider how to make those activities more focused. For example, research studies since at least the 1990s show that mammograms are falsely negative twice as often in dense breasts compared to less dense ones. Negative mammograms will give a false sense of security to some women with dense breasts. Focusing at least some of the awareness funding on the issue of dense breasts is worth considering.

As October approaches, I ask myself, “Uzma wrote a book to help people gain a visceral understanding of the breast cancer experience. What would she do with her book if she were still around?” I think she would make people ponder how to channel their donations according to their interests — awareness vs. research. She would reduce the price of the book for breast cancer awareness month. She would urge everyone who buys it during this time to donate the money they save to their favorite breast cancer cause.

So here it is: Both the paperback and Kindle versions will sell at a reduced price through October. I am calling it the Mixed Feelings Book Sale partly because of Uzma’s mixed feelings about October. And partly because of my mixed feelings about helping get her book out without her on my side.

How You Cure Breast Cancer According To Google

If you rely on google:

This is how you cure breast cancer:

Take a handful of kale and add turmeric to it then put it in carrot juice and use it as enema for 15 days then stand in a yoga pose for another five days then massage cannabis oil all over and slip and slide for two days followed by organic ground coffee enemas until you successfully shit out all the cancer. There!

Just stay in downward dog all your life with your head in coconut and avocado oil and have someone sprinkle a light dusting of matcha and green tea over you.

🤣🤣🤣🤣

Date: 19 September 2017

[Commentary by Dheeraj Raina: This was a Facebook post of Uzma’s. Read this to understand my approach to turning some of Uzma’s Facebook posts into blog posts. Upon learning that she had stage 4 cancer, some people would start asking her what she ate or start giving her unsolicited advice about what she should eat. Or should have eaten to prevent cancer. It bothered Uzma to no end. She believed in a holistic approach to health, took yoga classes, saw an integrative medicine doc, but never ever as an alternative to standard treatment. Earlier in the same year, as the following Facebook post, her frustration led her to write one of her popular posts, Diet Crazy: A Rant. This is along the same lines. I bet somebody had given her diet advice the same day.  The last line, though, is illustrative of the power of Uzma’s writing. She can make you conjure up images that make you feel what she is feeling. My addition to the post is in italics.]