How did we get here?

January 22, 2012

— A conversation with my husband, shortly after arriving home this afternoon with fresh oxygen tanks, spots on my liver, fluid pushing around my lungs (likely filled with cancer, as are the tumors inside) and at least one broken vertebra that must be healed before we resume any kind of treatment. —

How did we get here? I asked my love, across the bed strewn with children’s toys, books, and an oxygen tank.

We got here because of your amazing strength, commitment, and love for your family that you have shown since you were diagnosed – almost 5 years since diagnosis, 4.5 years since we were afraid it would end, 3 years after most IBC patients make it, all because of you. The medical details don’t matter. Our life has been a nonstop adventure.

Nonstop. I agree. And because of you, always at my side, supporting me, joking with me, taking me to yet another appointment and holding my hand. Kidding me about the speed I drink the contrast shakes, and raising eyebrows with me as the tech’s hands jiggle as he tries to place the line.

What, aren’t you going to blog anymore goodbyes?

I am not blogging goodbyes. I am not saying goodbye to you yet. I won’t.

You will have to soon. Hospice comes in an hour, and since I need Pallative radiation to fix the latest spine fracture, I can’t go to treatment anymore. We need hospice, at least for a time.

No matter what, you deserve to feel better right now, and you deserve a chance to enjoy family and friends, and if that means we use hospice, or go to the moon, or paint you green, then we will do those things. I have dibs on the paintbrush.

Green’s really not my color.

I have not yet encountered a color you could not make yours. Purple?

Purple. I’ll change clothes and listen to her when she comes, but I can’t promise that I’ll be sparkly to the hospice lady.

I’m willing to bet the hospice lady is not expecting to be greeted with confetti and song.

Good point. More tomorrow, my friends. I hope.

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A little trouble

January 17, 2012

I’ve been having shortness of breath for several weeks, which we chalked up to the pneumonia, but it’s just gotten worse. Yesterday I had trouble just walking from one room to the next. Today, just sitting on the couch with a friend. In fact, I’m still having trouble, even though I’ve been hooked up to the oxygen all day.

We’re going to the ER now, to get scans, at the direction of my oncologist. Please pray for us tonight.

Love to you all and all whom you love,
Susan


Looking for help? (cancer)

January 13, 2012

I’m still fighting pneumonia and the associated fatigue, but I received the most beautiful scarf in the mail from the people at L. Erickson’s Good Wishes program, which sends a silk scarf or head wrap to anyone losing their hair as a result of illness or treatment.  I’m assuming they mean cancer only and not alopecia, but it couldn’t hurt to ask!  Thank you, Good Wishes!

I’ve updated a resource page at Mothers With Cancer accordingly — check there if you’re helping a cancer patient and looking for resources for cleaning, cooking, hats and scarves, lymphedema sleeves, wigs, makeup, and how to organize to help a friend with cancer.  I don’t know what I’d have done without my friends this year and in 2007 – consider yourselves hugged!

Mothers With Cancer: Help page


The gift

December 20, 2011

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?

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?