More birthdays, please!

October 13, 2009

As the health care bill makes its way through the Senate Finance Committee, and pink washes over the countryside, the American Cancer Society is campaigning for more birthdays.  That’s right.  More birthdays.  Where in the past perhaps women have unofficially “stopped” having birthdays at 39, the ACS wants everyone to have more birthdays.

And you know what?  I do too.   I desperately want more birthdays.  I want to turn 39, and 40, and all the lovely numbers that come after that.  I want to blow out the candles with my kids, and see my littlest one turn 3, and 4, and become the big kid that he thinks he already is.  I want to take my big kid to school, and teach both kids to drive, and be there when they get all gussied up for prom, or whatever the digital equivalent will be in 2025 (yikes!).

I’m taking steps to make that happen.  And I’m telling you all about it every step of the way.  I also talk a lot about mothers with cancer that I know from the other site, like Lyn, who just returned home from a double mastectomy and full hysterectomy … just a week after she finished chemo!  Or our Aussie friend Jenni Ballentyne, who is living full-time at hospice now, seeing her son Jack on the weekend, who has fought the good fight, but whose time is near.  Or Katie Homen, who we recently lost.  But today I have someone else to talk about.

Sherry K.  Miss Sherry, as my kids call her, as their faces light up with smiles.  Miss Sherry was my son’s preschool teacher last year.  Soft-spoken, kind, but determined, Miss Sherry always saw the best in the kids, and helped bring it out in them.  The class of 3’s was close-knit, gentle with each other, and friends with all.  In the early morning, both boys and girls sat quietly and did puzzles at the table.  At 10, both girls and boys ran around on the playground.  At noon pickup, they were the well-behaved class that came down the hall quietly, but with smiles on their face.  Whether encouraging parents to leave notes of praise for good behavior the kids had done or telling us about the way our kids loved participating in the drama skits she planned, Miss Sherry was always gentle, and kind, and attentive, and all the things you’d hope your child’s preschool teacher would be.

Miss Sherry helped me, too.  The first day I met her was only days after my oopherectomy, and I was so faint it was difficult for me to squeeze into the little chairs at the preschool-sized table.  I was self-conscious about my arm, with the sleeve and glove that marked me as “different.”  I didn’t want my kid to be seen as different, though.  I didn’t want people feeling sorry for him, or have him referred to as “the one whose mom has cancer.”  I didn’t want people to know.  But Miss Sherry knew.  And she pulled me aside and shared a little secret with me.

Miss Sherry is a 21 year survivor of breast cancer.  And she is now doing wonderfully, and remembers it as a time long ago, not a driver of every day life.  Throughout the year, she kept tabs on me as well as my child, asking about me when I wasn’t the one to drop Widget off at school, complimenting me on my hair as it grew out, or when my color returned and I looked like I had more energy.  She was there when I had to go back to daily lymphedema therapy, again, and again, and sometimes Widget was late to school.  She is still there at the school this year, and we smile as we pass in the hall.  We know something that not everyone knows, you see.  We know how very precious this life is, and how I almost lost this opportunity to tell you so.

Miss Sherry put a note in the preschool newsletter this week, reminding everyone to get their mammograms, do their self-exams, and remind “all the women in your life” to do the same.  It may seem like a little thing, to say what everyone says in October, but for a 21 year survivor to even want to think about this dastardly disease again, much less show such compassion and outreach, means a lot to me.

And so I dedicate this post to Miss Sherry, and I wish for her, and for all of you, many, many more birthdays.

Is there a survivor in your life that inspires you, makes you laugh, or touches your heart? Join the ACS more birthdays meme by posting about her or him on your own blog, or in the comments here, and grab yourself this badge.

More birthdays. That sounds pretty good to me.


Health Updates

June 6, 2009

Looks like I’ll be here in the hospital for a full 72 hours while the cultures grow (testing for a variety of bacterial infections), making my return home sometime Monday at the very earliest.  Until I’m better, I’ll twitter health updates and they’ll post to the top right of this blog page.  Thanks for all of the lovely support.  You’re keeping this quiet hospital room filled with friendship.


Budget cuts in the E.R.

June 6, 2009

Look, I know we’re in a recession.

I know that times are tight, money is a problem, and hospital emergency rooms are overcrowded and underfunded.  I sympathize.  Really, I do.  But I had a very difficult experience on Thursday night as a direct result of a budget cut that eliminated the phlebotomists in the emergency room at our local hospital — one that may have put me in danger — and I’m writing to tell you about it.

I arrived at the E.R. at 8:30 p.m. with a high fever and a history of Stage IIIC inflammatory breast cancer.  When the E.R. nurse came to draw my blood 3 hours later, I told her that I had had a lot of chemo and my veins were pretty bad.  My right arm is strictly off-limits because of the lymphedema, so the veins in my left always have to be used for blood draws, and they’re not fully over the chemo yet.  The nurse scoffed and told me, “There’s no such thing as chemo veins. I’ve never had a problem.”  She put a small IV in my hand, and, 20 minutes later, picked my best vein (the only one people can usually get) for the second blood draw, a small one.

By the time the preliminary tests came back and the doctor determined that I would need a CT scan, that nurse had gone to lunch.  The doctor reached for my arm to be sure that the IV was in place, and was surprised to find that the IV stub was the wrong size.  It couldn’t be used for the CT because the contrast (iodine) couldn’t be flushed in fast enough.  She began to look for another usable vein, and was frustrated not to find one.  She called in another nurse.  No luck.  So the doctor began to try to prick new veins, but failed repeatedly to draw blood.  She decided to reuse the one that had been stuck earlier, sticking it closer to my heart in an attempt to tap it for new blood.  But it had been used already, and the blood clotted in the needle.  She jabbed a nearby vein, but it blew.  While I recoiled in pain, she tried — and blew — another vein, leaving me with two cm-sized purple scars and soreness on my arm today.

All this time, she ranted loudly about the incompetence of the first nurse, who took my good vein for a simple draw, leaving her nothing for the CT, when a CT was likely from the beginning.  Over and over she blasted her, alternating her incompetence with pronouncements on my need for, “an immediate CT, one which you should have had days ago!”  Finally, she said, “We can’t wait any longer,” and told the 6 ft tall male nurse to invert the bed, putting my head as low as it would go.  When I asked her what she was doing, she told me, “I’m going to put this needle into your neck.”

Needless, to say, I began to panic and shake, and had a very difficult time of it.  She did get the needle in, and the CT technician arrived soon after (apparently the IV only became an issue the minute my turn had arrived for the machine) to take me for my test.  He, on the other hand, was nothing but kind, with encouraging words.  The pillow on the CT table was so soft, and he talked to me like an equal, not a science experiment.  By the time my test was over, I was calm again.  He offered me the pillow and a blanket, two amenities not easy to come by in the E.R., and I was finally able to be comfortable while I waited for the test results.   Well, as comfortable as you can be with an IV in one hand, two blown veins in the elbow, and an IV sticking out from the side of my neck like Herman Munster.

Test results that would show whether or not I had cancer again and my lifestopwatch would have to be reset.  Because, you see, it wasn’t enough that the E.R. doc scared me with her jabbing and her frustration with the nurse-who-wasn’t-a-phlebotomist, but the E.R. doc also went on and on about whether or not it was cancer recurring — an occurence which my oncologist (at another hospital) has since assured me is almost never marked by a sustained high fever.

Days later, I’m still shaken by this, and when the phlebotomist came in today for a blood draw, I braced myself for a difficult time, warning her that my veins were shot in the same way that I had the original E.R. nurse.  She saw the purple clots and very carefully chose a vein nearby that I couldn’t even see.  The blood draw was quick and almost painless.  It was incredible.  I asked, “Is it because we’re on the oncology ward that you’re so good with chemo veins?”

“No,” she answered, “I’m a phlebotomist.”

I’ve since found out that the hospital fired or reassigned the phlebotomists working in the E.R. as a cost-cutting measure.  There’s not a single one down there.  And that includes the nurse who scoffed at me when I told her from an E.R. bed, “I have chemo veins.”


How not to fix a fever

June 3, 2009

It would have been funny … if it weren’t my body, I suppose.

If my body were a car, say, with an engine that was overheating or there was something amiss with the fuel injector, and they made me wait day after day for “Joe” to call me back and let me know what needed to be done.  And then Joe never called back, and “Bo” was the supposed guy to talk to the next day, and he didn’t call me back either.  And then I finally got to talk to the AAA guy, not the right guy, but someone who could tell me whether the problem was serious, and he chastised me for not bringing it in because it could blow up any minute.  And that I could bring it in 13 hours from now, no sooner, and please just sit in it and think about things until then. And then I’d have to take it several places for the tests, because God forbid the same fix-it-shop be able to open the hood AND look under it AND check the oil AND fix it.  Oh, no, that’s four different places, and yes, the engine is still overheating and yes, this is very serious, and why didn’t you bring it in on Monday?

That sounds ridiculous, right?

And yet … Saturday night I spiked a fever of 103.5′, tossing and turning terribly throughout the night, gasping in pain with every breath.  I was apparently too drowsy to really realize it, but I woke in the morning feeling absolutely awful, and the pains in my chest reduced to sore muscles from the exertion (could it be that I’m not as fit as I think I am?).  I was in and out of it all day Sunday and Monday, up to 104.4′, never below 102′, and I called the doctor at 9:00 Monday morning to speak to a nurse.  I was pretty sure it was the flu (since, you know, it’s going around … the WORLD) but needed to know whether to stay home and away from other possible infections or come in and see if there was something to be done about it (and I’m totally against unnecessary antibiotics, so I didn’t jump unnecessarily).

So I called just after 9 a.m. Monday morning.  The front desk receptionist at the doctor’s office put me on hold.  For 8 minutes.  When I realized that I’d been shunted nowhere, I called back, explained my symptoms, and asked for an appointment.  No can do; all the same day appointments had been booked (before 10 a.m.) and they don’t schedule tomorrow’s until tomorrow morning.  Well may I speak to a nurse?  Click.  Ring.  To another phone that was never answered.  After another 10 minutes, I hung up and called back (again).  Explained again that it was rather urgent and I just needed to know whether to go to the hospital or not, since I had a history and all.  She took a message and told me to wait for a return call.

I waited.  And waited.  And waited.  I lay there lethargically, unable to make decisions, and with no interest in watching TV or reading (for once) as my fever climbed to 104.4′ despite Motrin and Tylenol.  Just before midnight Monday, my fever broke violently, and my chills and shaking turned to sweat.  I watched my temperature drop to 100′, and 100′ has never looked so good.  Tuesday at 5 p.m. a nurse returned my Monday 10 a.m. call.  The office was closed.

Tuesday night my fever returned, and the pain in my chest returned too, wracking the right side of my lungs and making me shudder with every breath, first on the right side and then in the center.  It was awful, but really weird, and not something I thought deserving of the ER at midnight.  (Everyone knows the morning nurses are much kinder and tests move more quickly.)

It was an awful night, but then I remembered a trick to dealing with our health care system that requires physician approval before going to the ER … if one wants insurance to pay for it … and I do.  I called the after-hours answering service at 7 a.m, before the doctor’s office opened.  The physician on call called me back (eventually) and was alarmed that my fever was so high and I hadn’t been seen.  When I explained what had happened with his own office, he just sighed and said, “Unfortunately, I hear that all the time.”

Whaaaaaaaat?  as my two year old would say.

Regardless, I followed his direction, called the office at 9 a.m., dropped his name, and told them that he had insisted that I be seen that day.  (I’ll speed this up; I’m getting pretty tired too.)

When An hour after I arrived for my appointment, I was ushered into an exam room.  By this time, my fever had gone back up and I was shaking with chills again.  Very uncomfortable, nervous.  Listening to the doctor chat with a 40-year patient next door and zoning in and out.  After a quick exam and listen to my lungs, he folded his arms and said, “Tell me about your cancer history again.”  “Mmmm-hmmm.”  “Here’s the thing.  I’m not hearing sufficient lung function in there.  Whether or not it’s a tumor, it’s almost certainly pneumonia.  I suspect it’s a tumor because of the way you describe the pain on the right side, in a line.  When you try to breathe, the pain is breaking along the tumor and shooting up and down the right side.”

The what?  Dude, I came in with the flu and you’re sending me out with a tumor?

“Here’s a referral to get an x-ray.  Go.  Go now.  Do you have someone to drive you?”  My dad came and picked me up, as I had been in no shape to drive, and we drove across town to the radiology center.  I figured we’d have to cross back a different way to get blood drawn too, to check my white blood cells, so settled in for a long day.

There’s a whole nother post about waiting for hours in the doctor’s office (and then the radiology center) with the flu, and receptionists uncaring about contagion, but I’m exhausted tonight, so I’ll cut to the chase.  I had an x-ray, I was told to wait, the right guy came back from lunch and read the x-ray, they called my doctor, and he sent a message back to me to go home and wait for further instructions.

Two hours later he says that the x-ray was pretty normal, nothing acute showing there, and that rules out pneumonia. “What about the tumor?” I said.  Oh, they didn’t see one,” he said. But I knew what to ask as a followup: “If one had been there, would the x-ray have picked it up?”  “No,” he said.

So he jerked me around about a tumor for several hours today without even ordering the test and the truth is that he doesn’t know and isn’t particularly interested in finding out.  But if I’m still running a fever on Friday, I’m to call the office again.

Yeah.

That’s going to happen.

My husband went out to pick up the antibiotic, and I collapsed into a deep sleep for several hours.