Pneumonia.

Pneumonia. Again. Still. Unable to stop the coughing, I asked the chemo nurse this week who I should see for it – my primary care doctor, who tends to overreact and send me to the ER for lung trouble, or my oncologist, who is primarily concerned with the cancer, not other worries. She responded that I did the right thing already, as she didn’t want to give me chemo if I was already sick.

The nurse popped back in a little while later, letting me know that my doctor had ordered a chest x-ray, which we could do at the hospital before we left that day (after chemo, which we could have).

My oncologist called last night with the verdict: pneumonia. My lungs still have gunk in them and I have to lay low for a little while, taking more antibiotics, using the inhaler and such to
recover. What a lovely addition to chemo this week.

I’m very tired. Slept til 1 pm yesterday, but today I was awake a little longer, if not any more productive. Just tired. and drenched from the return of the hot flashes, which reappeared when I restarted chemo this Fall.

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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.

Blogalicious, baby!

I’ve been looking forward to Blogalicious, the annual conference celebrating the diversity of women in social media, for months. This weekend, it finally arrived, and my husband whisked me from radiation treatment to the conference across town, arriving just in time to plot and plan the next event with American Cancer Society representatives.

Friends @Teachmama Amy and @Techsavvymama Leticia met me at the door with a wheelchair, freshly borrowed so we could navigate the huge conference center in comfort. I gratefully accepted, fighting off nausea and dabbing on makeup, and we headed over to the meeting in style.

When it was our turn, shortly after @TedRubin tried to lead the conference attendees to lunch smiling and skipping, Angela, the American Cancer Society representative, talked about the more birthdays initiative and introduced me to “tell my story”. My (personal) goal was to celebrate the work and research that had brought us this far, to teach why more research is necessary, and to ask for more research on metastatic disease. This is what I said:

I am alive today because of research funded by organizations like the American Cancer Society and the federal government.

I was diagnosed with inflammatory breast cancer in June 2007. I had a year of chemotherapy, surgery, and radiation, all developed by really smart researchers funded through the efforts of men and women like you. The treatments worked, and I have *lived* for 4.5 years while my babies grew up and went to school. I am grateful, so grateful, for that.

But the cancer came back. Now, like 150,000 other women and men in America, I am living with metastatic disease. Metastatic breast cancer, as some of you know all too well, is when the cancer moves away from the breast and recurs in the lungs, the liver, and other vital organs.

Now, I’m going to let you in on a dirty little secret: No one dies of breast cancer confined to their breast. Some of us die from treatment, but most of us die when the cancer has moved to our vital organs and shut them down. We die of metastatic disease. There are treatments we can try, but there is no cure.

When I was diagnosed with metastatic breast cancer this year, I was reassured that there were 20 chemotherapy drugs that we could try. We tried one. It worked, for a while. Then it stopped working. Three of the 20 drugs are in short supply right now, so I can’t have those. There are sixteen drugs left.

I will be on chemotherapy once a week, for the rest of my life. That is, until we’re out of drugs that work. That is why I believe we need more research. All of us with metastatic disease — and the 30% of women whose breast cancer will spread and become metastatic — will die without more research.

Oh, and — Research on metastatic disease is woefully underfunded, at just 3% of all breast cancer research.

Fight with me.

As I fight for my life each day at radiation or each week at chemo, join me and the American Cancer Society as we fight for more birthdays.

… After I spoke, Angela shared her testimony and encouraged everyone to sign up at cancer.org for more information about what they can do in the fight against cancer. The lights were dimmed and the two hundred bloggers in attendance lit candles perched on mini cupcakes and sang “happy birthday” in honor of the people in our lives who have celebrated more birthdays, thanks to cancer research and the treatment it enables.

Rock on, ACS, and rock on bloggers with heart. I hope you help us share the message that there is still work to be done, and we need to do the research on metastatic disease if there is to be hope for a cure.

Wishes

As we set off on our early morning walk, Little Bear scooting along on his tricycle and 6 year old Widget on his bike, the sky was blue and clear, the weekend’s rainclouds just a memory.

Four year old Little Bear stopped and plucked a dandelion in full feather, saying, “I wish for a dog!” “Me too,” cried his brother. Me three, I said, and we blew the fluff right off that dandelion so enthusiastically that a seed or two landed in Little Bear’s open mouth. Sputtering, he recovered his dignity and we continued up the hill.

At the top, Widget picked a second dandelion, asking me first what I wished for, if I could have anything in the world. As we had had a little talk about cancer that morning, preparing him for an upcoming class for kids of parents with cancer, I was honest with him, kneeling down and telling him my wish for many more years together.  “Me too!” said Widget, and he asked “What do you wish for, Bear?” “A dog!” said Bear, oblivious to the topic at hand, focused entirely on the Chow we’d passed earlier.

We blew that dandelion out fiercely, taking care to avoid Bear’s face this time, but one must have floated back our direction, because as I heard Widget explain what had just happened to Bear, I had to wipe something from my eye.  Such little bits of children they are, to deal with such big topics, but so strong.

My sadness disappeared quickly as I heard Widget explain, “We wished for many more years together, Bear. Maybe even a whole lifetime!”

The sun was shining as he pedaled away, and the birds sang happily above.