Monday, July 29, 2013

Awaiting scan results, and other happenings

Today, I anxiously await a call from my doctor regarding last week's bone scan and CT scans.  Usually I would have a follow-up appointment with the doctor to get the results of these tests that I have done approximately every 3-4 months.  Since my doctor is out of the office this week (stay-cation, per our conversation last week,) she said she would contact me with the results either Friday (3 days ago) or Monday (today.)  Danny asked how I felt about that -- getting results by phone or email (actually MDA's messaging service.)  I feel fine about it as long as it's good results!  It's a time that all cancer patients stress over.  Waiting for test results.  No matter where you are in your cancer journey, it's normal to worry.  I know this from LOTS of experience, and also from relating to other cancer patients and survivors.  Of course my mind tends to dwell on the possible negatives.  Is she not calling me because she's contemplating how to break the bad news to me?  If so, is she now regretting that she agreed to contact me without a face-to-face appointment?  Has she forgotten to look up my results in the first place?  Oh, the power of negative thinking!  I am busying myself with setting up The Pink Ribbon Shop's Summer Sale, working on sports pictures for my son's youth football team, and making sure the girls' paperwork and supplies are in order for band camp which started today.  I went to the grocery.  We have family coming for dinner tonight (fried shrimp, YAY!)  But I know, that today is the day that I'm supposed to find out, and I am making sure my phone is with me, on my person, at all times.  It's just a layer of stress, or a cloud of stress, hanging over me.

I am feeling pretty good today.  My pinkie nail that was previously infected and had fallen off is coming back nicely... woohoo!  And I am healing up from my pass-out that occurred a few weeks ago.  Shortly before that, I had started doing some exercising.  Around the house, with weights.  Squats, lifts, etc.  Taking it real, real slow.  Went bike riding a couple times, me and David (my 10-year-old.)  I was feeling SO good!  On our way to bring the girls to Camp Lone Star (a Lutheran church camp a couple hours away,) I was telling Danny just how good I felt to be exercising again.  Love the feeling of getting stronger.  The endorphins were flowing, and I even thought that I already was looking better.  (probably not the case, as it hadn't been that long, but still, exercise will make you feel that good!)

I kid you not, later on THAT SAME DAY, I developed a fever and started having diarrhea again.  And I had no appetite whatsoever.  The fever got up to 101.8, late in the evening, and I just went to bed.  I couldn't bear the thought of making another trip to the emergency room.  Well the next morning, the fever was gone!  And never came back!  Thank goodness I decided not to rush to the ER since it was over 100.5 as the clinic advises.  However, the diarrhea continued, and I worried that the C. diff was back.  I had read that it has a high risk of recurrence, and since I am still on chemo, I was still at risk.  I laid around the house all weekend, not eating or drinking much, but feeling so-so.  I'm pretty sure I've covered this before, but maybe it's been a while.  I am a huge snowball fan.  Not snow cones, but snowballs.  Chocolate with cream, oh yeah!  Anyway ... I try to limit myself to snowballs only on the weekend, because if I don't, then sadly I am weak-willed and will get several a week.  Well, it was the weekend, and I figured what better time to get a large chocolate snowball when I am fighting against dehydration caused by diarrhea.  Right?  So I drive my weak & sick self and my 16-year-old daughter Christa to the snowball stand not far from the house.  It's about 100 degrees outside, give or take a few degrees.  There is no line, so thankfully there won't be a long wait.  We place our order.  I started to not feel well, so I sat down on the bench.  Then it was about our turn to pick up our snowballs, so we proceed to the pick-up window and stand in front, waiting.  I started to feel a little weak, then blackness came over my vision.  I remember saying "I don't feel good."

The next thing I remember, I open my eyes and say "I'm on the ground??"  I did not know why I was on the ground, or how I got to the ground, but I was on my back and there were several people standing over me.  Christa was on the phone with 9-1-1, clearly very shaken and worried.  My hat was gone and so were my sunglasses.  (Ahhh!  I'm in public, bald!)   According to Christa who witnessed the incident, I didn't respond when she was saying "Mom!  Mom!" and then I shook, then did some sort of weird and grotesque backwards lean over the railing of the snowball stand.  Luckily I did not continue over the rail backwards and head first, but went forward again and landed on the stand's porch, clunk-clunk-clunking my way to the porch floor.  It was only later that we pieced together all the clunking noises into a sequence of my injuries.

I awoke but still didn't feel up to getting up.  Sorry, Tropical SnowBalls, for passing out on your front porch then staying there for a while!  Surely that couldn't be good for business!  I did have the wherewithal to tell Christa to cancel the 9-1-1 call and just call her Dad to come get us.  Everyone around, which included the employees and customers of the snowball stand, was great -- very helpful and caring.  They applied cool wet rags to my neck and face and talked to me the whole time we waited for Danny to get there.  He got there real quick, helped me up and we headed to his truck to go home ... but I did make sure that one of us had my chocolate snowball in hand.  You know ... for later!

We went home and I went straight to bed.  I didn't know the extent of my injuries, or else they probably wouldn't have let me get in bed.  I started having pain in various places and we discovered that on the way down to the ground, I had hit my lower back, head, shoulder, and tailbone.  I had bruising and brushburn on my lower back (thank you railing.)  I had a bruise on my right shoulder, and a large red and sore area on the right side of my head.  The tailbone pain would "rear" its ugly head (I'm so punny) later.  I seemed to be fine, neurologically, and I recovered at home and took it easy the next few days.  The tailbone proved be the longest-lasting of all the injury's effects, and still today, about 5 weeks later, it is still bothersome.  But it IS improving, so I am happy for that, especially after reading that some tailbone injuries take weeks or months to heal, and some turn into lifelong pain issues!

Since all seemed to be healing up, and the diarrhea went away on its own (must not have been another bout of C. diff,) my chemo treatments continued as scheduled.  Didn't miss a one!  (Um, yay?)  At my next follow-up visit with the nurse practitioner, I detailed what had happened.  She was unmoved, and in her notes, proceeded to document the event with several inaccuracies such as  "Last week, she passed out during exercise." and "She did not hit her head."  Clearly we are not communicating well!!  At least she didn't say I had a "flat affect" like a previous note.

On another, yet bizarre note ...  one of my MD Anderson physicians was placed on administrative leave after allegedly POISONING HER LOVER with antifreeze!  I had only seen Dr. Gonzalez a couple of times, as she was my replacement main-campus doctor after Dr. Green left.  Danny forwarded me the Houston Chronicle article with the subject line "You've got to be kidding me!"  His dad had asked him if he heard of the MDA doctor who was arrested for allegedly poisoning her boyfriend.  Danny replied that no, he hadn't, but there are 100's if not 1000's of doctors at MDA.  A quick look-up and there she was, Dr. Gonzalez's mug shot and the story of how her physician boyfriend (with whom she had a "casual sexual relationship") had nearly died of kidney failure after she served him two strangely sweet tasting cups of coffee, even though he liked his coffee black!  His medical and lab findings were consistent with ethylene glycol poisoning.  Wow.  Just wow.

Needless to say, she is no longer one of my doctors, nor any other MDA patient's.  It's OK, because really, I didn't need two doctors.  Dr. Green, on the main campus, had been my primary oncologist for several years.  Dr. Coscio is my doctor at the Woodland's satellite location, and she mainly had been following my chemo schedules and infusions.  When Dr. Green left, she handed me to Dr. Gonzalez.  Since starting chemo last Summer, I was only seeing a doc downtown to get test/scan results.  All other times, usually about every 3-4 weeks, I was seeing Dr. Coscio.  And I really like her and am happy with her.  The decision to switch all of my care over to Dr. Coscio was now an easy one!   Honestly it was a bit awkward seeing her so often and developing a rapport with her, yet seeing a doctor I hardly knew (Dr. Gonzalez) for my test results every 3 months. Additionally, although Dr. Coscio is practicing as a general oncologist as one of just a handful of doctors at the MDA satellite campus @ the Woodlands, she explained that she is mostly seeing breast cancer patients and that breast cancer is her main specialty and interest.  She attends the weekly roundtable of breast cancer specialists where they meet at the main campus to discuss patients course of treatment and care.  So I feel a lot more comfortable knowing all of that about her, even though she is a relatively young doctor.  This little change uncomplicates my healthcare somewhat, which is always good!

Well, still waiting on results.  My only little worry is that I'm feeling a little discomfort just next to the sternum, on the right side.  This is how it felt when I had the enlarged lymph nodes adjacent to the sternum on the left side.  Hoping & praying for the best!  Want to stay on Abraxane for a long, long time!  I recently posted on the forum for advanced breast cancer patients, asking how long others were on Abraxane.  The record:  8 YEARS!  Hope I can beat that!

Thanks for reading.  Be back soon.

Tuesday, July 2, 2013

And it continues...the snowballing of side effects

Sighhhhh.  You know how sometimes, it's just one thing after another?  That's how I'm feeling now.  When will it end?!  I don't even have time to write, in one post, all that's been going on.  I'm having to keep notes on what's happening, so I can blog about it later.  Guess I'll just keep plugging away and eventually I'll be caught up...

Upon discharge from the ER after the pinkie fiasco, I was given prescriptions for two antibiotics.  One to take by mouth for 10 days and one to take for 20 days.  After the mangling and abuse my pinkie had endured, I certainly needed to be on antibiotics!  I faithfully took them until gone.  The pinkie v-e-r-y s-l-o-w-l-y improved, yet had a long way to go, even after the antibiotic course.  But I was moving on and getting better.  Yay.

A few, maybe 2-3 weeks after finishing the antibiotics, I started having diarrhea.  I really didn't think much of it, just oh great, now I've got some sort of stomach bug.  No fever, just watery diarrhea.  I told my doctor, who prescribed Lomotil.  But after a whole week of it, my temperature did start to rise, and the diarrhea was getting more and more severe.  Every time I sat on the toilet, there it was.  Not wanting to go to the ER again, especially not prematurely and not just for nothing, I waited until the fever persisted for over 24 hours.  So by the time I arrived at the MDA ER, I was really sick.  Lifeless, dehydrated, not eating, weight loss, febrile, and having 8-10 watery stools per day.  This time, we drove to the MDA main campus, intentionally avoiding the hospital's ER at MDA's satellite campus.  I was taken in fairly quickly.

After obtaining my history (including that of my extended course of antibiotics a few weeks prior,) the ER doc thought I probably had an infection called C. diff.  I remember this from nursing school:  a nasty bacterial infection in the bowels by an organism called Clostridium difficile.  The doc ordered lots of stuff.  IV fluids, labs, abdominal x-rays, urine culture, blood cultures, and stool culture (stool culture being the only way to definitively diagnosis C. diff.)  I received potassium and magnesium since I was low on those, as a result of the prolonged diarrhea.  I received Flagyl, the treatment of choice for C. diff infection.  Since cultures take a few days, I was told that they were treating me with the assumption that that's what I had.  After reading more about C. diff, it all made perfect sense to me.

C. diff is sometimes referred to as a "superbug."  This means it's super nasty, spreading through hospitals, and difficult to get rid of.  It commonly occurs after prolonged broad-spectrum antibiotic use, and it especially likes people who are immunocompromised, such as chemo patients, and the elderly.  So there were my 2 risk factors:  recent antibiotic use, plus I'm on chemo.  Yep.

I was actually happy that it seemed to be such a clear cut diagnosis.  There was a known treatment for it:  Flagyl.  Ironically, the treatment is yet another antibiotic!  I went home to recover after a night in the ER.  The diarrhea eventually stopped (it took weeks to transition into a sort of normalcy of BMs.)  For a couple of weeks, my abdomen actually ached, and it was tender to the touch.  I was told this was from inflammation of the colon, as a result of the C. diff infection.  Wow!  This was some serious stuff.  Never had THAT before.

At my follow-up with my oncologist (well, her nurse practitioner,) I asked if the stool culture had come back.  She said, "It doesn't look like one was done."  I was like, "WHAT?!"  Nope, not done.  Trust me, I DID provide one.  Passed the ER nurse in the hall after doing so, and held it up.  Told her there it was, on the counter, once back in my room.  And again, pointed it out to her, on the counter, as I was being discharged from the ER.  Evidently, she never submitted it to the lab!  Why can't people do their jobs??  THE MOST important and conclusive test to diagnose C. diff, and I provided the sample and it didn't get sent.  UGGHH!  So frustrating.

Cancer > chemo > nails separating from nailbeds > pinkie infection > antibiotics > C. diff infection from antibiotic course.  Side effects from treatment, then side effects from treatment of those side effects.  Help me!

It's times like these that I find it really hard to accept that God is in control.  Of course I know this is truth, but we as humans don't always understand His ways, and we never will.  I also know that things could be much worse.  We never have to look far to see those less fortunate than ourselves.  I need to pray for more understanding and patience.