Savoring three good days, and Christmas Eve

By the grace of God, my good days lasted through the Wednesday before Christmas, enabling me to spend time with my dear friend Marty; go to prayer group as just “one of the girls,” standing when they stood, staying to the last; wrapping presents with my husband; leading our family’s Jesse Tree devotions; and going to school Wednesday to watch Little Bear’s nativity pagent.

The little kids were so good!  They each had a part to play, and they took it seriously for God.  Little Bear was “a little shepherd, with JG!” his best friend, as he never hesitated to remind us.  The two of them cracked themselves up a bit, and I have pics of a cunning little smile peeking out of the string-tied headdress, but it was all in good fun.  I had fun too, delighting in their success and joyously hugging so many of the mamas I had seen only via email and facebook this year.  Members of my prayer group rejoiced with me a second day as our kids ran around afterwards, celebrating the hour or so of freedom – at school with friends, but free to play as they wished, securely in the care of loving teachers and parents.

And then I rested.  Thursday, Friday, and Saturday were miserable, catching up from the times I had joyously spent in the company of friends and family (my parents for three weeks, and then my husband’s parents for two weeks and counting).  I lay in bed, discouraged, sad, and with pain wrapped around my sides and straight through my bad spot (where the terrible pain indicates cancer) as if pierced by an arrow right where my spine meets my waistband.  Nothing worked on my pain, and I cried and cried alone upstairs for much of the days, passing the time reading scripture and novels alike, searching for something to inspire me, to distract me, to pass the hours, and to give me strength.  The times I was able to go downstairs with my family were delightful, if too short:  making myself comfortable enough with the fancy chair, pillows, and oxygen; playing checkers with 7 year old Widget and teaching him chess (at his request!); and just sitting by the lit-up Christmas tree overflowing with presents despite our rule this year to just choose three….

I just had to tough it out, waiting for methodone to take over and reduce the pain, aided by fentnyl for breakthrough pain (as if it were ever not breaking through) — but the medicines’ effectiveness lessened as my tolerance increased.  Truthfully, I ought maybe to have stayed in bed Saturday evening, but I couldn’t.  Saturday night – Christmas Eve! – was the culmination of so many things for me. It was a goal, you see.  A goal set just about a year ago, when we were told that the cancer had spread to bone, first the ribs and then the spine, neck, and hips, and the pain came back, and we were gobsmacked by the setback that began as a year of treatment and worry, changing attitudes and trying to understand what our “new normal” might be.  This year was to be Widget’s year in the Christmas Eve Nativity play, you see, and we had looked forward to it for so long – we already had plans for the grandparents all to visit our house this year at Christmas, for the first time ever – and I remember crying in frustration a year ago that I might not be here to see it.

But I saw it.  I picked myself up off the bed and put on my pretty clothes, and went to the church with grandparents from all around.  We saw Widget pass by in his costume, and, I have to say, there’s never been a finer Joseph since the very first one.  He was so handsome in the dark maroon fabric, serious face giving way to twinkling eyes as I surprised him by stopping by the children’s prep room before the church service began.  He ran up to me with a great big hug, and, as I saw him start to get overwhelmed by the excited children, I was able to whisper to another parent that that happens, and if he starts trying to control things, it’s only because the ruckus makes him nervous.  The room quieted (coincidentally); I left, and Widget later joined us in the pew.  As the priest stood up to read the story of the nativity, the little children took their places around the church.  Widget found his place in the back, standing next to the little girl who was to be Mary, and they walked slowly and seriously down the aisle to the altar.  Finding a manger there, the little children knelt and listened while the story played out and the others came to worship the Christ child, symbolized of course by a doll.  Afterwards, I was so proud of my little boy turned bigger boy, and when he sang the carols from the hymnal with me, I might have shed a tear.

I led a prayer myself later in the service, the same one used to pray for the sick and dying each week, and it was right and good.  And then, just before we walked out, singing Joy to the World, a visitor to our church came and knelt at the manger, bringing his gifts first to the symbol of the Christ child, and then, we hoped, to children everywhere.

The next week I would pay for being out that night, exerting myself beyond where I thought I could, but it was worth it to see my beautiful Widget be so reverent and grown-up, to sit with Little Bear on my lap and worship God, and to look fondly down the pew and see all of our grandparents together for a day (not to mention visiting friends!), and for the next day’s family celebration besides.

The week has been at times horrible and at times terrifying, but my medicines are again starting to catch up to the pain and I have a new commitment from my doctors.  We will control the pain.  They will control the pain, using new approaches and stronger medicines, and they understand now how very terrifying it is for me to work so very hard and to endure so much for so long in hopes of reaching a goal (sitting in a chair with minimal pain; reading, writing, and playing happily with my children; and eating dinner each night with my family) that is far below the quality of life enjoyed by most, and far below what I consider an acceptable exchange for giving up days each week for chemotherapy and other infusions, losing my hair, my independence, and my ability to leave the house without someone driving me (I’ve only driven once since July), and suffering the pain of metastasis in my bones that sends me to bed in tears one or many more times a day.

To survive now, I need to come to terms with this exchange, and to find out what I can do to make the days worthwhile, so I can sleep peacefully at night while we wait for the medicines to heal – or at least to relieve pain that the cancer has caused.  I am trying to shift my perspective from anger that my future that has been taken from me into gratitude, again, for all the days that I have been given since my cancer metastasized and indeed, since my initial diagnosis with breast cancer in June of 2007.

Our Christmas card this year was stuffed full of pictures of the good times – so very many good times that would never have happened for me without the medical advances enabled by cancer research, the confidence that comes from belief in a loving God and the existence of tomorrow, and a supportive and loving family that loves me for what I can do, not judging when I can’t.

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The gift

One of the most difficult things about being homebound with a serious illness (or two) is remembering that (most likely) things will get better.  That you will have enough energy to go up and down the stairs again.  That you will be able to play with your children again, and not just from your pillow or your chair.  That you will soon put away the oxygen, and plan days that include leaving the house.  That you will be able to do, and see, and go … and be YOU again.

The past two weeks have been terribly hard for me.  I don’t do sitting well.  I tried to fill my days with learning about my new tablet computer (love it!), with reading classics (like Andrew Lang’s Blue Fairy book – did you know that the real story of Sleeping Beauty has hardly begun when she is woken with a kiss?  In fact the whole castle awakes, and they don’t live happily after – there are ogres!), and with keeping up with the latest on Slate, Salon, HuffPo, and the Daily Beast.  But those diversions were not nearly as fun as they could have been had snuggling into the soft recliner and reading been a choice.

I just wanted to get up and do things again.  Encourage my kids with games and playtime more of the afternoon instead of just homework and learning in the half hour after school.  Eat dinner with my family (I collapsed in bed at 4 or 5 p.m. most evenings, exhausted from the day, and nauseated by warm food after the chemo).  Work on my computer again, catching up on what I’ve missed, and plotting new work for the spring.  Make and address all those Christmas cards (Will they make it there by Christmas now? Who knows?).  But my body didn’t cooperate.  It wanted to sit.  Or sleep.  And the cough just wouldn’t go away.  Every time I went upstairs – or over to the fridge, even – I had to rest, lie down, and use oxygen to get my breath back.

And then, Sunday night, Marty came to visit.  The novena my church family is saying neared its close.  We continued our family time for Advent.  I finished the pill bottle of antibiotics, and I began to recover from Thursday’s chemotherapy and bone strengthening infusion.

That night we talked and talked and talked, well into the wee hours, and when I tired we went upstairs or put my oxygen on.  But Monday — I can’t explain what happened Monday, but after talking in the recliners downstairs for a while, I got up and began to fuss with my fish tank.  It had suffered during my illness too – you can barely see the little guys through all the muck on the walls!  We talked and laughed and scrubbed the walls.  We scrubbed algae off the glass, walking back and forth to the utility sink, and we laughed when Marty almost dropped the tank hood onto the Science magazines below.  We made that sucker shine, and we talked about her getting a fish tank too (before she left, I sent a dozen beautiful guppies with her, sharing new life in my house with hers).  We watched a movie together, The Help, that we’d planned to watch the day of its release in the theater.  We played with the boys, and I comforted Widget after school, when his earache flared, and Marty tried to engage them in a craft.  We addressed Christmas cards, as we do now, the week or two before Christmas, no matter how I’m feeling.  And then we went downstairs and I ate dinner with my family – and I mean ate.  After three weeks of illness, where I lost 25 pounds because I couldn’t even stand the smell of warm foods, I ate a whole dinner, including seconds.  We were up and doing things the whole. entire. day.

And today I feel like a new person.  Wait, that’s not quite right.  I feel like myself again. I woke up this morning ready to go, showering, eating, and helping the boys get ready, starting a blog post when they went to school.  I’m smiling again, and hopeful, and ready to get back on track and start again.  I went to prayer group, alive and alight with the happiness that comes of being reminded that today is a new day, full of possibilities.  Including possibilities of me getting things done again, of games to play and talks to have and maybe even taking Widget to church tonight for practice – for he is going to be in the Christmas Eve nativity with his class!  Today I feel alive again.

I’m bemused by the thought, juxtoposed with the past few weeks, and I laughed out loud as I related it to my friends this morning.  How could such a difference happen so fast?  And yet, it wasn’t fast at all, was it?  It took days of sitting and waiting and resting, weeks of praying, and treatment after treatment at the hospital.  I believe in prayer.  I believe that medicine works and that my treatments will be successful in extending my life and improving the time that I have left here.  Why, then, was I so surprised yesterday that I finally felt like myself again?

…

On Sunday morning, I sat quietly with my husband before they left for church.  We were grateful for the day, another day granted to us after such a scare at the hospital, and he whispered softly to me with amazement that I was still here, saying, “This Christmas is God’s gift to us.”  Yes, it is, I agreed, and sent him off with a kiss.  We will celebrate this Christmas together with joy, just as we celebrate God’s gift to the world over 2000 years ago.

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.

Slowly improving

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.