Do bumps on head mean cancer metastasis?

December 14, 2011

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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Slowly improving

December 13, 2011

I’m improving.  It’s been a perfectly awful couple of weeks, but I’m improving.  Day by day, I claim the smallest accomplishments as I claw myself back to health, or some reasonable facsimile thereof, after spending several days last week in the hospital with pneumonia, preceded by chemo Thursday and oxycontin withdrawal Friday and Saturday as I switched to a different drug.  I went to the ER on Sunday night with trouble breathing, and they admitted me due to that, plus low blood pressure, low O2 rate, and junk in my chest that later led to a diagnosis of  pneumonia.  The doctors watched me closely to catch any sign of sepsis early (there was none!), and, on the whole (meaning except for 1 nurse and 2 technicians), they treated me well.  I left the hospital on Wednesday, and, luckily, I didn’t have to go back to the ER all week.

The first day home, I slept, connected all day and night to the oxygen tubes that the hospital sent on ahead and the technicians had to explain to my parents, at home with the kids.  The second day, I was able to be downstairs for a few hours with my children, sitting in the lovely chair that Kimberly, a fellow breast cancer survivor and friend of Elaine’s, gave me the week before to soothe my pains as I waited for the new medications to kick in.  Sitting in that chair has been perfectly wonderful, as it is heavily cushioned and has one of those automatic controls that positions me comfortably and helps me get up when I’m ready to go upstairs.  It’s also plushy, distracting from my portable oxygen container alongside.  The third day, I was able to disconnect the oxygen for about half the day, which made me feel more confident being around the kids.  They were perfectly wonderful, of course, accepting it with a minimum of curiosity and no fear, but I hated them to see me on oxygen in our home.  Before that, we went to my primary care doctor for a check-in, and he pronounced me *much* better than expected based on what I’d been through.  Hurrah!

The fourth day, I continued to work on several crossword puzzles and Sudoku, desperate to fight off chemobrain, but not ready yet to blog, and I struggled through the whole day awake and downstairs.  We put up the Christmas tree as a family and strung the lights.  We’re a little behind on our Jesse Tree / Family Advent time, but we are doing it as we can, and if that means we color the pictures or read the Old Testament stories in the middle of the day instead of after dinner (my original plan! ha!), then that’s just fine.  Jess brought me communion again that day, and the whole family participated in the prayers.  Jess and I cried together over the loss of our good friend, Judy, who lost her battle just hours after being admitted to hospice Friday night.  I admit, I pouted much of the day.  It’s just not fair — cancer always wins — and I hate the battle metaphor now, as the truth is that we women who are diagnosed with metastatic cancer are fighting for every day of our life — and there is no way for us to “win” such a battle, no matter how hard we try and no matter what we do.  Once you are metastatic, until we find a cure, cancer will win every. single. time.

(Deep breath and new news – did I tell you about the study announced earlier this month?  New research shows that 15 of 17 IBC patients overexpress some protein — and if we can now find the drug that hits that protein, THERE IS HOPE that we may shut it down entirely.  This is big science and big hope.  Especially for me – I was one of the 17 women who donated her tissues for that study!  Those are MY CELLS they studied!  I am full of hope, when I remember this – it’s just a matter now of the doctors finding the right drugs, and making it through the layers of trials to Level IV.  Fast.)

On the fifth day, I gave up the oxygen for good, except when I was too out of breath after coming upstairs — but I did come upstairs as I needed to, which was major, after several days stuck in the chair or with my portable oxygen canister.  We decorated the Christmas tree, reminiscing about my childhood ornaments and my husband’s, and the lovely little ones for the children.  I sat in the chair again, ’tis true, but I sat all day and it was a victory.

Monday was hard again, as I wasn’t “all better,” and I wanted to be, but today is Tuesday and I’ve been able to sit and work much of the day – just email, and blog posts, and catching up on the bills, but I’m happy, because it’s progress.  I pray that my progress continue and that I recover from pneumonia right on schedule this weekend.  I go to chemo on Thursday, which will help my overall health outlook, but it will still be tough layered on top of this illness.

My friends are holding a novena for healing tonight and through this week, for me, for a sweet little girl who has cancer well before her time, and for other members of our church who are sick at this time of year.  I only learned of it on Sunday, but I am hopeful that their prayers added to mine and yours will bring me strength and peace.  I want to live so much.  So much.


Going HOME!

December 7, 2011

I’m going home!

Friends, I am so excited and so blessed to write these words this morning, just six days after chemo and a change in meds, as doubling my oxycontin didn’t change its effectiveness; five days after I held my husband’s hand and panicked (ICAN’TGETABREATH!) over oxycontin withdrawal, while my father monitored my pulse and checked my respiration rate; three days after I was sent to the ER with 102′ fever and shortness of breath, which turned out to be pneumonia; just two days after I was admitted to the neuro unit, with 87/57 blood pressure, where they could put me on oxygen and monitor my heart. Time passed quickly in these small beige rooms, and much has changed.

Of all the things I’ll take away from this week, I most want to remember my lovinghusband, who left my side only when asked (7-8 am and pm, unit rules); my incredible parents, who watched my kids and played, dressed, and fed them while we were gone; my friends, willing and eager to pick me up and take me to the ER – or anywhere, really (I wish I could take them somewhere fun for once!), and many of the hospital staff, of course:

Housekeeping, not usually asked to clean the rooms of late-stage cancer patients, didn’t blink at my “do” or the hair I shed on their nice clean floors. At one point, there were three nice women with two brooms and a mop!

The efficient techs who quietly measured my vital signs every 4 hours. Especially the ones with a smile, like the ones on Sunday and Tuesday. Thank you, ladies.

The nurses who talked to me in gentle reassuring tones, or happy tones with friendly words, who made me feel not quite so out-of-place, as I struggled with the addition of “oxygen tubes” as an accessory.

The oncology doctors who checked in and kept things level for me, reassuring me that this has nothing to do with the cancer cells themselves, and I’m not really immunocompromised in our sense of the word, even when people here say I am.

The medical student who read every word of my chart, sitting down after rounds to ask me about IBC and how it presented (Hi, Brian!).

The doctor who really took the time to get to know me, realizing that pneumonia is terrifying for an advanced cancer patient. He patiently explained the treatments and their intended effects, including his take on what might happen at home and when I’d need to come back. He even called my primary care doctor to explain what was going on — and even made me an appointment! His willingness to spend a little extra time with me ensured that I was confident in the treatment — and I am.

The two women who came to my room from pastoral care. Eucharistic ministers, they were simply members of a church trained to share the body and the spirit of Christ with the sick. Their visits were healing, and I felt God’s presence.

Thank you all. I’m going home!


Let’s just not make up data here

December 6, 2011

I’m not going home tonight. I’ve been eager to, keeping a list of what was needed (from me: keep blood pressure and oxygen saturation high enough and temperature low enough; from nursing staff: order oxygen machine and have someone explain it to patient; from nurse: nebulizer; from doc: write prescription for antibiotics; and from onc docs, a yea verily approving my status at the end of it all), but at the last, the lead oncologist said, “I know you have a great support system at home and you really want to go, but I really don’t want you to leave. What would it take for you to stay another night?”

My medication needs to be on a better-kept schedule, I said, without missing a beat.

When Kristen and I arrived at the ER, I gave the check-in clerk a list of my meds with dosages and times clearly marked. The clerk took the paper and carefully copied what she needed onto her form. The form was put in my file and used to tell the nurses when each of my regular medications was due.

Except – except – that when I was shown that form tonight, I saw exactly what must have happened. The front desk clerk actually wrote down the meds, dosages, and how many times the pills were to be taken daily, not the times themselves. Then, when I was admitted, someone else translated “twice a day” to 7 a.m., but “three times a day” starting at 6 a.m. The third must have become “upon waking,” so that the three pills I take together were delivered throughout the early morning. The last set of pills? Didn’t happen, as I had to ask for them myself.

This becomes particularly unnerving when pills – including the narcotic that sent me into crazy withdrawal this weekend – are delivered early, late, and when it’s convenient, as she put it. “It doesn’t matter that exactly when you take it. I have half an hour before and half an hour after that to get it to you.” This last was said as she delivered the pills 35 minutes early, along with a 25 minute late prescription that had been missed entirely earlier in the day. Now narcotics are not to be messed with, so while I compliantly took the others early (or late?) I refused to take those pills until 2:00 as scheduled. (My doc said I was right about that – and he made a quick stop at the nurses’ station afterwards, hopefully solving the problem.)

Being in the hospital is no fun, but it’s made even worse when you don’t know if the pills you’re being given are the right ones at the right times.

I don’t know what to recommend to fix this, though – bring two copies of the med list and insist that one be put directly in your chart?


Susan is ok

December 6, 2011

If you’ve heard that I’ve been ill, in pain, or in the hospital; stopped oxycontin and suffered from withdrawal, had pneumonia, low bp, had trouble breathing, went on oxygen, can’t catch a breath, keep coughing, get dizzy when I stand up, and am completely losing my hair, it’s all true. I’m in the hospital but I’m finally able to sit up for a bit and I’m feeling better. I hope to go home today.

We are ok. We are together. We love each other and we love you. We are blessed.

Typing is difficult, because I’ve got the O2 clip taped bulkily round my middle finger, but I’ll catch you all up as I can!


A hard Thanksgiving

November 26, 2011

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

November 22, 2011

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.