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.

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Going HOME!

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

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

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!