Do bumps on head mean cancer metastasis?

No. Or at least, not always. Two Sundays ago, I googled that question, in endless combinations, and found no answer. I was alone, the others having gone to church, and I needed to know — were the squishy red bumps on my head a sign of brain mets, as my Grandmother’s had been so many years ago? Or were they irritation from bone mets spreading to my skull? What were these strange bumps, and how could I find an answer on a Sunday afternoon?

I ran my hands through my short hair, exasperated at the lack of information on the net and wracking my brain to recall other forums and bulletin boards. As I rested my hands on the desk, I turned them over, questioningly – and found the palms crossed with clumps of hair. I laughed, I cried, and my mother came in to comfort me. I told her what had happened – I was losing my hair! – and she put her arms around me in reassurance.

No, no, you misunderstand, Mom! I wasn’t crying for the loss of my hair. I was crying in relief – my fears had not come true – and I was not one step closer to the end. I was just losing my hair, a sign that the chemo was working, attacking the fastest-dividing cells, as it was supposed to do.

As I explained to my sons that night, this kind of chemo attacks the cells just as each divides into two new cells. The fastest dividing cells in a person’s body are cancer cells. The second fastest are the ones that make your hair grow. So when we see Mommy’s hair falling out, we know (hope) that the medicine is killing both the cancer and the hair cells as they divide!

The kids accepted this, and asked me what cells are next – stomach, I explained, which means my stomach may hurt over the next few weeks as well. We ended with great big hugs, and my 7 year old surreptitiously tugging on my hair in the back, just to check.

In fact, the next night, just before bed, he met me at the top of the stairs and yanked on it! I yelped, not remembering the previous day’s conversation, but just as quickly I remembered, lifted him up in a giant hug, and laughed and laughed with my smart boy, checking for himself that the chemo was working – reassuring himself, and me, that we would be okay.

It’s been a couple weeks now, and my hair has significantly thinned on top, but I still have hair around the edges and faith that the chemo will work. Today I’m back at chemo, scared to take it on top of pneumonia, but scared even more to skip another week. A silly fear? perhaps, but when my day comes I know that I will have done everything I can to fight this thing and win one more day over cancer.

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A hard Thanksgiving

I’m sorry, but it was very, very hard to be Thankful this Thanksgiving.  I am, of course, enormously grateful and thankful and blissed-out over the success that medicine has had in extending my life four and a half years after my cancer was discovered in June of 2007.  As I look back over the year, I know just how lucky I am, luckier than friends lost along the way, and as my children are now in school and settled in small desks next to their own friends, present and future, I am lucky, we are lucky, and grateful.

but the grateful this week is overwhelmed by the unceasing pain.  I have not left my bed or downstairs chair since the chemo last Thursday, and at least four days (Sat, Sun, Wed, Thurs) have been lost entirely to the constant burning pain of the knot in my spine, just at my waistband.  All week, I sit in my chair downstairs with family, desperate not to lose another day to bed.  We talk, we read together, my fingers play with my Kindle Fire as family members come in and out of the room, company changing as the lighting does, throughout the hours of the day.  The pain is so intense I can barely see my loving family through it.  As my children climb onto my lap for snuggles, they push the shoulder this way or slide on my leg that way, and the knot on my spine cries out in pain. I do not push them off.  I mask my gasps and shift the children just a little to one side or the other, burying my head in their hair and hoping that they don’t hear, and that their brother doesn’t see my pain as he looks up from his talk with Grandma across the room.

They do hear, of course, and they do know, and they do listen, and they are on guard this week, running to my side when they hear a gasp and burying their heads in my chest as I grunt to get up from the chair.  They need reassurance, and I give it to them wordlessly, the only thing I can give today, this week.  A hug.  A pat.  A snuggle, a smile.  With or without words, telling them always Mama loves you.

The guilt of not working on the big projects and finishing the things that need to be finished is everpresent. I can’t decide, my body can’t decide, whether to rest for now so that I can recover and be healthy to finish each project when I feel better or to push forward and finish it right now so that it gets done in my lifetime, and so I have kind of a mid-illness crisis when I do get control of the pain, however briefly, and I don’t know whether to spend my time working or resting

but I always know to spend my time with my children, reading, or talking, or playing Yahtzee, Connect 4, and matchbox cars.  This is right, no matter how good or bad I feel, and I push myself to have these good times this week for them, for me, for family.  I push myself past the pain and into the love, as long as I can, and when I can push no longer I rest, asking my pallative care physician to increase the medication.  He does, questioning no longer, adding more medicine Thanksgiving night, as if this were the normal thing to do on the evening of a happy, family-centered holiday.  More pain control.  More meds.  Will it work?  For how long?  I don’t know, but I hope that it will work, and as I sleep I relax a little, the knot loosening, and I smile.  It worked.  It worked on Friday, and for part of the day today, and each day was a quiet day well spent.

At the end of the holiday, I am still grateful for the years given to me after the diagnosis, and the opportunity to be my children’s mother, even on the hard days.  To do research and to enjoy my work.  To push for good and to support those doing good.  To come back to the church and to seek for ways to use my talents on the days that I can stand to stand.  To be there for friends and family and children, and to make each day count.

I am so tired now, though, and now, I must rest again.

…

A favor to a friend, Susan McCorkindale, and in gratitude for the clinical trials, care, and pallative care given to me – if you live in the D.C. area and are interested in national health care issues, from health care reform to navigating cancer care: what every patient needs to know, please consider attending the FREE symposium next week at Georgetown Lombardi Comprehensive Cancer Center: “Fighting a Smarter War Against Cancer: Linking Policy to the Patient.”  It’s a great lineup, and the speakers are top-notch, from Senators, to Law professors to pharmaceutical companies, researchers, doctors, nurses, and pallative care.  Check the schedule, and see if you can attend all or part of this amazing opportunity at Georgetown.

Homebound

Well, it’s time to face it.  My pain level is so high, my energy level so low (aided and abetted by the pain medication, chemotherapy, and other drugs), and sitting is so uncomfortable (a batch of cancer cells sits on my spine in what must be a lump, pushing on me when I sit normally) that I’m just not getting out much anymore.

Add a sick little boy to the mix (just the crud that’s been going around the schools), and none of us have left the house for days.

But are we really missing much?

Our groceries come to us via Peapod.  News of the day is delivered via TV, internet, or dead tree on the front doorstep.  Mail moved to email and automatic payments long ago.  Movies are easily streamed, and even my prescriptions can be mailed to me (although that requires a bit of advanced planning and recurring prescriptions; since mine have been changing a lot lately (more pain meds), we fill scrips on the way back from treatment).  My hairdresser cuts my hair out of her home, near the school, and her cuts are even better than the fancy ones downtown.  I can order anything I need through the internet, including clothes from Lands’ End and Christmas presents from Amazon.  With Amazon Prime, I can even get a razor delivered in 2 days, as I learned from Stimeyland and her mother one day this summer.

I can browse stores and ideas via Pinterest, buy via store web sites, try on in my own living room, and send back what doesn’t fit or flatter.  The boys and I got our fall outfits this way, and it’s actually been rather fun — particularly without the whining of physically visiting store after store.  There are few things that we can’t do via internet, aside from my cancer treatment — it turns out that even my pediatrician makes housecalls if a child gets very sick on the weekend (what a surprise!  But it’s easier than opening up the office, he said, if you both live nearby.  It was so nice for us all to be able to be there for his sick appointment, instead of worrying at home while I waited for my husband and son to return).

And as far as social media, a culture that I adopted out of necessity after my cancer diagnosis and treatment in 2007?  Well, both new and old friendships are alive and well using Facebook, Twitter, and our blogs, along with phone calls to keep up with the everyday.  I used Second Life to attend conferences I couldn’t attend then, reveling in the freedom I suddenly had to talk to other people I knew from around the world while our avatars stood in the same room together, listening to panels and enjoying virtual wine and cheese.  It didn’t have to be that complicated, of course; now we know that Ustream works just fine for panel discussions, and WebEx for smaller meetings.

I even have a groovy new tablet computer called the Kindle Fire that allows me to do some social media tasks (email, Facebook, blog reading and commenting) from from bed without the excess heat and weight of a laptop when that angry spot on my spine acts up and it’s impossible to sit too long at my desktop in the room next door.   It’s larger interface is perfect for blog reading and commenting is a breeze with the virtual keyboard and memory functions – a huge improvement over smartphones.

The Fire also entertains me, bringing web sites, ebooks, real books, tv, movies, music, Suduku, and crossword puzzles right to my bedside without the startup time of a laptop or the heaviness of its footprint.  It’s a new generation of accessibility – as I was happy for my laptop in 2007, I am grateful for my Fire in 2011.  As it turns out, there are workarounds after workarounds and we’re doing pretty well, all things considered.

I do, however, miss a few things quite a lot.

• I miss going out with my friends.  Seeing many of them over at The DC Moms and on their own blogs or Facebook is awesome, but it’s just not the same.
• I miss greeting the other moms at school dropoff and pickup, exchanging smiles and good wishes for the day.
• I miss going to church with my family, little heads resting on shoulders and valiant little boy attempts next to me to sing the morning’s hymn.
• I miss going to work, cheerfully saying hi to colleagues in the morning and brainstorming together over lunch, even though I still can do my work here, at my desk, or from bed if necessary if the pain is too high or poorly controlled.
• I miss taking walks through the park with my little ones, although I suspect I did that more when they were very little than I might today, with 7 and 5 year olds.  Still, I had planned to go walking in the woods with them, enjoying the smells of Fall and the forest, so very many times … and, this year, we haven’t.

I do miss these times away from the house, although I see now that what I miss are the times with people, not the times running around doing errands or shopping for this or that or finding just the perfect whatever-it-is that’s on my list today.  As I have good days, and I know I will have good days again, I want to remember to prioritize times with people.

In the meantime, I’m going to start commenting on blogs again.  Calling my friends just to talk.  And letting you know how very much you mean to me, keeping me sane and happy, even though I’m almost completely homebound.

…

Nothing is permanent.  Although this is how I feel today, as my meds are only poorly controlling the pain, I was able to get out two weeks ago, and it was marvelous.  I had a wonderful time at the Women and Mars Conference.  It took me days to recover from attending just two panels that day (and then chemo the next day), but it was absolutely wonderful to leave the house and share what I’ve been studying lately.  By the way, the panel discussion was livestreamed and recorded – you can view Astronaut Catherine Coleman’s remarks and the  Women and Mars Panel 1 from this link – the panel begins at about 1:19 on the clip, and I give my prepared remarks at about 1:48 into the clip.  As a bonus, Dr. Jim Green, the Planetary Science Division Director at NASA, awarded me the Planetary Science Division Public Service Award a few minutes before the end, at 2:52; at this point, I was simply jello.

Metastatic Breast Cancer

I am a woman with metastatic breast cancer.  My cancer was first detected as inflammatory breast cancer nearly 4.5 years ago, although I’ve also had invasive breast cancer, Paget’s disease, and recurrences as the cancer spread to lymph nodes under my left arm (2010), to lymph nodes in the center of my chest (New Year’s 2011), and then to my bones in March 2011.

Metastatic breast cancer means that cancer cells have spread from my right breast to other sites, made themselves at home, and reproduced so many times that now each cell has become a mass of cells detectable by today’s x-rays, CT scans, PET scans, and MRIs.  I have those tests frequently now, to determine how well my current treatment is proceeding, whether the cancer is progressing or held at bay, and when we should change treatments to something that might be more effective.  Last week’s tests and scans showed that there is still cancer in my neck, spine, ribs, and hips.  The blood tests had been showing a reduction in the total load of cancer cells in my body, but as the numbers slowed to a standstill, they agreed with the increasing pain in my hips, left ribs, and neck, one that agrees with the scans; we will have to change treatments.

Just to survive, I spend a day at the hospital every two out of three weeks now, receiving chemotherapy through the port implanted in my chest.  To lessen the pain of bone metastasis, caused by swelling of the bone as the cancer cells populate the core and push outward against its thin covering, I am undergoing pallative radiation therapy this month:  each workday for three weeks.  It is working – Thank God, it is working! – but it takes the whole morning to go for treatment and back, and then I sleep it off for several hours, waking when my children arrive home from school.  Yes, I have two little children.  It is hard to balance treatment with their care, but I am grateful for the opportunity to try.  I am grateful that my body responded to treatment the first time, that my chemotherapy, surgery, and radiation in 2007-8 beat back the cancer and gave me another chance to live, to be their mom — the baby, after all, is only four-and-a-half.

But, like 30% of other breast cancer survivors, the cancer came back.  I blamed myself, but we now know that the recurrence of cancer was not my fault.  Researchers now say that if a cancer is going to recur, cancer cells have already escaped the breast for other parts of the body even before the primary cancer is detected by today’s best methods of detection, let alone breast self-exams, the most highly recommended method of detection of breast cancers.

I am not alone.  Over 150,000 women and some men are living with metastatic breast cancer in the U.S.  45,000 die each year.  There is no cure.  [In 1980, the median survival after initial diagnosis of metastatic breast cancer (that is, not one that was diagnosed earlier, like mine) was 3 years.  Twenty years later, that number has not significantly changed.]

There are treatments that improve quality of life, like my radiation therapy this month, and chemotherapy to reduce the tumor burden that we have to struggle against, but these treatments are given to improve quality of life, not to cure.  The end result, after all, is the same.

In January of this year, I participated in my first clinical trial, eager to help move research forward, excited about participating in research on metastatic disease.  It was unsuccessful; by February, I was confined to bed, the soles of my feet red hot, skin peeled off, and in terrible shape.  Only then did I *really* understand that a Phase I/II clinical trial first tests toxicity; the amount of drug that the body can bear within reason.  The level that I was given was too much.

I started a new trial in March that compared standard-of-care injections with less frequent injections.  That was fine, except I did worry whether the study would be successful, as I was assigned to have less frequent injections, and was I hurting my chances for survival with this decision?  No one knew, and that was the purpose of that clinical trial.  I continue receiving those injections, but was moved off the trial when the next round of scans showed that the cancer spread to my bones.  My next treatment will be with a different drug.

I believe in research.  I believe in it so much that I have put my body on the line, participating in clinical trials before I even understood the rarity of the opportunity.  Trials for metastatic disease are few and far between — for the FDA mandates that before any clinical trial on metastatic disease start, the drug be shown effective in reducing primary breast cancers first.  But many researchers are now saying that metastatic disease does not behave the same as primary disease, so what good does this regulation do for those of us whose cancer has already come back, despite the drugs we used for our primary disease?

The regulation protects us, yes.  But it also makes the testing of new drugs that might work on metastatic breast cancer much rarer than it might otherwise be.

I have attended two significant events with other metastatic women this year, and each time we have asked the organizers and advocates how we can participate in more clinical trials.  How we can donate tissue, or time, or our very bodies … so that others may benefit from the research, and so that we can see the community actively working toward control of — or even a cure for — metastatic breast cancer.

With everything from groceries to debit cards going pink this month, special coverage on the news and advertisements on the radio, there is money and energy flowing in for awareness, treatment, and research on primary breast cancer.  But the funding for metastatic breast cancer remains at 3% of all funding for breast cancer research in the United States.

Metastatic breast cancer is a variation of the breast cancer we hear about every day; it is a progression of that disease, and a deadly one.  It is what I feared; it is what so many of us cancer survivors diagnosed with Stage I, II, or III breast cancer fear.  While women with Stage I, II, or III breast cancer look for the “cure” and celebrate “hope,” those of us who have had a recurrence or are diagnosed first at Stage IV are not quite so happy and shiny this month of October.  Our “hope” is more desperate, and there is no chance today that we our cancer will ever be “cured.”

We attend the Pinktober events, the celebrations of progress for breast cancer, perhaps standing on the sidelines, quietly cheering our sisters on.  We are genuinely thrilled for the progress that has been made in understanding about the importance of breast cancer self-exams; about follow up testing for everyone, no matter their ability to pay; and in the discovery of 20 or so chemotherapies that can beat back primary breast cancers, alone or in combination.  We smile as our Stage I, II, and III sisters take the stage, thrilled to share their stories and years of survival since that day each found a lump in her breast, and we clap as hard as anyone else for their survival.  It is, after all wonderful news.  We lower our eyes in remembrance of the women that the organization has lost in the past year, and we try to cheer for the hopeful outlook of more awareness, more research that the organizers swear to us will come if we just buy one more t-shirt, sell ten more tchotchkes, write that check before you leave.  We accept the pink ribbon and pin it to our shirts, but we often feel that it doesn’t quite fit.

The pink ribbons and survivor pride and celebrations are parts of a wonderful day, but our day is not done, you see.  When we go home, we take off our ribbons and take our pills and set our alarms, for in the morning, we have a chemo appointment.  Or a follow-up visit.  A scan.  Or we’re just waiting to see the results — has the cancer progressed since last time?

There is often deep reflection on those dark nights.  We support early detection, breast self-exams, mammograms, and we smile when someone shows us their pink ribbons or tries on pin one on us.  But still, we may come away from events like this with a tear in our eye, or mad as hell.  If there are so many reasons to “hope,” we ask, then can we please be included?  If all these walks and collections and special pink hair dryers and vacuum cleaners are being sold “for the cure,” is some of it, at least some of it, going to research metastatic disease?

Why is research on metastatic disease funded at a level of just 3% of all breast cancer research, when metastatic disease is the state that all breast cancer patients reach if their cancer recurs?  Here’s a dirty little secret:  very few people die of breast cancer confined to the breast.  Breast cancer deaths are caused by treatment or metastasis, after the initial cancer has spread away from the breast and into vital organs.  We need to research that end of the cancer spectrum too.

Yes, let’s prevent cancer.  By all means, let’s prevent one more woman from suffering with this disease.

But let’s also research metastatic cancer, more, and faster, and let’s prevent women from dying from this disease.

Over 30% of women diagnosed with Stage I, II, and III breast cancers will suffer a recurrence and become metastatic.   Many more are diagnosed at Stage IV, after the initial cancer has already spread.  There is no cure.  And yet only 3% of the funding is focused on this end state.

How is this right?

For more on Metastatic Breast Cancer Day: this article in the Huffington Post, the Metastatic Breast Cancer Network, Metavivor.org, @ihatebreastcancer Katherine O’Brian, age 45; @ccchronicles Sarah, age 41; @justenjoyhim Judy; @jodyms Women with Cancer, @pinkribbonblues Gayle Sulik, a cancer fighter’s stunning alterego @Chemobabe;  and the wonderful Twitter stylings of @stales, @talkabouthealth, and others who gather at #bcsm and #mbc.  Thank you for reading; our goal is to increase research funding for metastatic disease and to change the conversation.  When you hear “buy this and we’ll donate to breast cancer!” I hope you’ll wonder, or even ask, “What percentage of your organization’s funds go to research metastatic breast cancer?”