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.

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?

Every moment a memory

October 20, 2011

Without going too Hallmark-y on you, I just want to take a deep breath and share how wonderful life can be, even in the midst of all that cancer I talked about in my last post.  During difficult times, I’ve had to face the fact that I may not have many years left (oh, how much more positive that wording is now than when I was writing in all that pain!), and so every moment, every milestone that I get to reach with my children is that much sweeter.

Last week, my oldest came up with the idea for his Halloween costume, his first year requesting something himself:  a tornado.  We talked and sketched, measured and thought, and we designed him a tornado costume, complete with minature slinkys and farm animals that would spin around when he did.  I sent my guys to Target for a gray shirt and a little miscelleny, and when they came home, the seven-year-old collapsed with happiness, saying, “Mama, I cannot WAIT to be a mummy for Halloween!”  (Wait, what?)  So we spent Saturday afternoon together dying an old sheet with tea, tearing up the strips, and talking about the ancient Egyptians and their burial practices (fun fact: they pulled the deceased’s brain out their NOSE).  He dressed as a mummy for a friend’s costume party at the park on Sunday, and hilarity ensued.  (I was THERE.  For three hours, I was THERE.  It was an amazingly beautiful, clear day,  spent with sixteen small boys and their families, and I walked around and chatted with the best of them.  And then, I slept until Wednesday.)

My littlest woke up this morning at 4:00, wandered into my room, and cuddled up against me, saying drowsily, “I love you, Mama.”

And last weekend, the boys came tearing up the steps together, asking excitedly, “Mama, do you want us to get out the hammock so you can rest?”  I smiled as I got out of bed and transferred my tired tush to the hammock outside, where they promptly jumped in with me and made it a sailing ship, a pirate vessel, and then part of the Rebel Alliance.  It was a good deal rockier than my bed upstairs, but oh, so much happiness was had.

This, this is why I am thankful for treatment and the ten amazing women taking me to radiation therapy each morning this week and next.  Thank you for reading, particularly new readers coming here after the articles in USA Today and The Huffington Post this week.  Grab a chair.  Or a stack of pillows.  We’re pretty casual here on Toddler Planet.