Thursday, June 28, 2012

Calling My Angels

This is a precious experience that happened to me about two weeks ago.  I've shared it with most family, but thought I should put it "in writing" before I forget details.  It was just one of the many miracles of my blessed life.
I recently read the book, "Heaven is Here", by Stephanie Nielson.  Stephanie and her husband, Christian, were in a terrible airplane crash a few years ago, and Stephanie was burned over 80% of her body.  She tells of the experience of the plane crashing and exploding into flames.  She was in the back seat and couldn't get her seat belt unbuckled.  She was literally burning alive.  Finally, after several attempts, she thought, well, that's it, I'm not getting out.  It was at that point that she noticed people around her through the flames.  One of them was her "Nana", a beloved grandmother who had died.  Suddenly, the seat belt was unbuckled, someone was pushing her out of the plane, and she heard Nana say, "Roll."  Nana continued to come to her and comfort her many more times during her long hospital stay and recovery, and Stephanie always calls Nana one of her angels.
One night a few weeks ago, I had gotten out of bed because of a very painful backache.  Besides that, I had re-injured my right hand somehow, so that I couldn't lift anything or move it much without tremendous pain.  Just what I needed, right?  I walked around a bit, but then sunk into the recliner to get some relief.  I was tense with pain, almost to the point of nausea, when I started to think about Stephanie and Nana.  Now, I'm not comparing myself and my pain to anything even in the vicinity of Stephanie's--she has been brave and good through continuous pain and countless surgeries and I've been wimpy and complaining--but thoughts of my own angel (or angels) made me smile through the back spasms.  Who were my angels?  Certainly my sweet and funny dad, Roy.  Dean's patient, forgiving, and supportive parents, Cal and Janice.  My maternal grandparents, Lillie and Wilford.  My paternal grandparents, Mary and Newell.  Salt of the earth.  Hard-working.  Tender to their children and grandchildren.  Rich with heritage and traditions.  Yes, these were my angels.
I took a pillow off the couch and laid it across my knees.  Then, I bent way over, an action that usually brings pain from the abdomen, but a little relief for the back.  I can usually only sit that way for about five minutes or less until my stomach protests too much.  In my mind, I told my angels, "I wish, wish, wish I could have you give me a back rub--a simple, massaging, kneading back rub to break up the knots inside and ease the tension or whatever I need to get rid of the pain so I can go to sleep."  I laid my head on the pillow, so very tired of being sick and in pain.  I didn't see anyone.  I didn't feel hands on my back.  But, in my imagination, I visualized all seven of my angels running their hands over my back, going round and round in circles, pushing up and down and back and forth.
The next thing I knew, I woke up.  I lifted my head off the pillow and knew there were creases in my face.  I have no idea how long I was asleep, but I had truly fallen fast asleep.  And there was no pain in my back!  I slowly lifted myself to a regular sitting position and even my abdomen felt okay.  I was totally relaxed.  I knew I could go get back in my bed and finish the rest of the night in a good, sound sleep.  As I went to push myself out of the recliner, I pushed with my right hand and was shocked--it, too, was pain-free!  I had actually considered going to Instacare to have it checked the next morning, but there I was, waving it around, clenching and un-clenching without any pain at all.  It was too miraculous!  I couldn't stop smiling...and crying.  My angels had done it, I know.  All I had to do was call them and they came.
I've called them a few times since then, through scans and finding veins and MRIs, and I've felt them with me through it all.  The blessing of a family is a treasure beyond worth.

Saturday, June 23, 2012

Wish I Could Party

Back to Huntsman this week.  Tuesday's schedule was blood work and CT scans of abdomen/chest/neck/pelvis.  Wednesday's schedule was to visit with Dr. Grossmann and team for results and future plans.  I was nervous.  I have to imagine the worst and what my reaction will be.  I guess it helps soften the blow.  I was also anxious about drinking contrast and how my tummy would react, but it seemed to tolerate it fairly well.  My biggest complaint was that I got full way before the first bottle was empty and there loomed the second bottle like a whole gallon of liquid!  (It's not, but it sure seemed to be.)  We had to be there at 3:00 for blood work and the scan was scheduled for 3:30.  I was taken into the back room of the lab about 3:10, while Linds stayed in the waiting room.  I had two wonderful technicians, but bless their hearts, they had their work cut out for them.  This is when I wish I still had the PICC line because my veins have had it.  They are either hard as rocks or tend to roll once the needle is inserted.  They've been "used and abused".  It was double the trouble because I also had to have an IV for the scan, along with the two or three tubes of blood for the tests.  At one point, the nurse was able to insert the IV, but then couldn't get any blood for the tests.  When she went to flush the IV line, the vein had "blown" and she had to start all over again.  I think I was poked seven or eight times (or more--I kind of lost count) in the arms and the hands.  They brought in the warm blankets to wrap up my arms and warm water gloves to put on my hands.  Linds got worried and came back to see what was going on and got to watch the whole frustrating process firsthand.  At 3:50, she asked them to call Radiology to let them know that we were in the building, but were still getting the IV in.  Finally, using the smallest needle (a pediatric size), they were able to get blood and IV from my left hand.  It was probably 4:15 when I got to the Radiology desk to check in.  The scan took about 5-10 minutes, tops, for all that effort.  Oh boy.
Wednesday morning, early, we met with Dr. Grossmann, nurse Carolyn, and nurse Karen.  Carolyn came in first and immediately launched into the scans (which I was very grateful for).  They were all clear.  I am NED once more.  What a huge relief and miracle!  For all that has happened, this was the best possible news I could ever wish for.  If I could only party hearty...
There was one complication.  Scans showed a blood clot in my abdomen.  Weird.  But, when I heard it, I wondered if that was why I've had all the pain.  All the doctors would admit was "could be."  There were also two pockets of fluid, which was the cause of my re-admission to the hospital, but no one seemed too concerned with those.  I know Dr. Scaife told us at one point that when they take out the drains, any remaining fluids are eventually absorbed into the body.  Okay, then, hurry & absorb already.  The bad side of the clot is that I will have to go back on blood thinners, the injection type, two times a day.  And before that, I would also have to have a brain MRI to make sure there was no melanoma up there.  Dr. Grossmann explained that most "met mels" (metastatic melanoma) tend to bleed and he didn't want anything bleeding in the brain if I were to start the blood thinner right away.  Um, thanks. 
I had the MRI done Friday afternoon at the Clinical Neurosciences Clinic behind Huntsman.  Never been there before.  Dean and I walked through a maze of hallways (because of construction in the building) with signs to direct us to the little office--one receptionist, quiet as a library--no music, no TV, everyone whispering.  Poor Dean.  I could just see him kicking back and snoring as soon as I left the room.  There were two little girls ahead of me having MRIs for a gene mutation study.  They got to stay in their normal clothes.  I had to change into the fashionable gown and big pants.  Technician Judy was able to start an IV on the 2nd try, though she wrapped my arms in warm blankets for about 10 minutes after hearing my story.  She decided to go above a well-used vein with a pediatric needle and as she was about to put it in, she told me to exhale, like I was blowing out birthday candles.  In it went!  She said that sometimes you can "trick" the nerves and blood vessels into not going into spasms by something like a big exhale.  Awesome.  I'll try anything.  The test went quicker than I thought.  I listened to the radio, even though sometimes the machine was noisier than the music.  Dean went exploring and found a new quicker & easier way to the elevators (in the "under construction" side, but everything was finished--just waiting for carpet & paint), bought himself an Orange Fanta out of the vending machine, and was wide awake when I came out.  All went well and about 5:30, nurse Karen called and told me everything looked great and I could start the Lovenox (sp?) that evening.  Another miracle and relief!  NED (no evidence of disease) everywhere I was scanned, including the brain.  I ate a blue rasperry Otter Pop to celebrate.  It gave me a tummy-ache, but it sure tasted good.

Saturday, June 16, 2012

Behind the wheel Instacare

I'm a worrier.  I've lately been worried that I might have a UTI.  Not the usual symptoms, but I've had low urine output (in spite of drinking a fair amount of water during the day) and recently started getting a backache late in the afternoon.  Thursday I decided I'd worried long enough.  I wanted to get this thing checked out.  I called Dr. Scaife's nurse, Lindsay, and left a voicemail with my concern.  When she didn't get back to me by afternoon, I called Dr. Beckstead (my primary care doc).  I forgot...he has Thursdays off.  I considered going to Instacare, but decided to wait until Friday to see if I heard back from Lindsay.  Thursday's motto & silent prayer was "strength and stamina", as I had to see both Occ Therapy & Phys Therapy to be tested for discharge.  I was worried (of course) that they'd find me lacking and I'd have to continue with their visits.  So, STRENGTH & STAMINA was the call word, and indeed, I passed both reviews.  I told both therapists about my newest worry and the PT said I should call the home health nurse, Cassandra, to see what she suggested.  I hadn't even thought of her--I'm so used to contacting Dr. Scaife's office first.  Early Friday morning, I called Cassandra and asked if she could come take a urine sample and have it tested.  She said that they require a doctor's order and that she would call Dr. Scaife's office again.  A little later, she called back and said that since I was "so far out from surgery, the issue would have to be addressed by the primary care physician."  That sort of felt like a slap in the face--I'm still healing and recovering (and not very quickly), but they're done with me??  Okay.  Next, Cassandra called Dr. Beckstead's office.  The news from them was that Dr. B usually doesn't handle tests such as this unless he's seen me recently--which he hasn't, of course, because I've been ELSEWHERE!  So, another rejection.  I told Cassandra that I'd go to Instacare--I knew they would see me.
I told Janessa I was going to have to put on a dab of makeup and use that "strength & stamina" to drive to Instacare--my first time back behind the wheel since the surgery.  I guess I've been a tad anxious about it and wondered if I'd be able to handle it.  My little sweetie said she'd put on "real clothes" (she was in her jammies still) and come with me.  Whew, thank heavens.  Happily, it was no big deal.  I felt fine anxiety at all.
Instacare had a short line and the girls at the desk explained that their system had been down earlier, so things were a little nuts.  For one thing, the computer said I didn't need to pay a co-pay, even though I'm pretty sure I should have.  When I told the girl that, she said, "Well, since the computer doesn't think you do, I don't think it would accept it anyway.  We'll just bill you."  That was kind of nice.  Waited about 45 minutes (people ahead of me were being called back, having their vital signs taken, and then coming back to the waiting room to wait for an available exam room--yikes!) and then was called back.  Of course, immediately, the assistants and RNs and docs were worried about my fast heartbeat, which I assured them has been fast for several months now.  (Yep, that's another worry I live with...)  I was able to do a urine sample (had to pray about that, too), and then was taken to an exam room right away.  I had a bit of a fever (99.8), but blood pressure was good.  The doc came in and said he would have to look at the sample "under the microscope" because the first pass was inclusive to infection.  He ordered a blood test.  The cute phlebotomist was able to find a good vein first time and used a teensy needle to get what was needed--I appreciated that.  White blood cells were normal and not elevated.  So, doc comes back and says the tests are still inclusive--could be an infection, but might be kidney retention, which would require a visit to the ER (sound familiar?).  He did give me an antibiotic, which he said wouldn't hurt either way, but told me that if I don't start feeling better in a few days, ...well, I'm sure you can guess what he advised.  I'm going to give the antibiotic five days (I've got enough pills for 10) and then we'll see.  I also go for a CT scan on Tuesday, so that might show us something, too.  I'm going to ask them to scan that area, for sure.
Seems I just get going down the road and something sideswipes me.  And I still can't eat very's so frustrating.  This morning, I did manage to eat more than two bites of one scrambled egg with a tiny bit of cheese on a toasted English muffin with a dab of ketchup on top.  It tasted good, but I was done after two bites.  I made myself eat about four bites more.  Tonight, I'm craving Cafe Rio.  Waaaa, that probably won't happen either.
I'm hoping to go to one hour of church tomorrow in honor of Father's Day.  I have the best daddy, the best grandpas, the best father-in-law, and the best husband/father of my kids.  I also have the best son and son-in-law, who are wonderful fathers to their little ones.  Happy Dad's Day to all you good, generous men...and thanks be to my Heavenly Father who continues to bless me on this tough journey.

Tuesday, June 12, 2012

Not a Concern

I've been (secretly) worried about a hole in my abdomen where the very first drain was placed on May 1.  Since its removal on June 1, I've been tending it cautiously.  The drainage was gross from the beginning.  I had to change the gauze morning and night.  Then, the past week or so, I noticed that the skin around the hole was reddish.  I immediately worried about infection.  I started cleaning it with hydrogen peroxide and putting Neosporin on the inside of the gauze.  I worried that if I called the doc's office, they'd say, "Get in here!  We need to check it out!" and maybe even, "You'll have to have a new drain and stay in the hospital until it gets better!" (this is how all my nightmares start).  There wasn't any pain, even when I cleaned out the hole, and I imagined (hoped, prayed, wished) that the drainage was getting less.  Finally, I called Lindsay, Dr. Scaife's nurse, yesterday.  She listened to my concerns, especially when I said, "Do I need to come in to have it checked?", and immediately said, "Oh, no, this is completely normal.  Since this was the first drain, it will take the longest to heal, maybe up to two or three weeks.  These drains heal from the inside out, so as it's healing and closing up, it's pushing any fluid to the surface--that's the drainage you're seeing.  The fact that the drainage has been less in the past few days is a good sign that it's closing up properly."  She then went on to tell me that my "self-medication" of hydrogen peroxide and antibiotic (Neosporin) wasn't necessary--I should just keep the wound clean with soap and water and it would heal on its own. 
You can't imagine my relief as I hung up the phone.  After all my setbacks and complications, I just assumed this would be one of the many that would require a doctor's care and some sort of procedure.  To hear that I'm healing on my own was very reassuring.  I AM healing!  I'm getting a little stronger and steadier every day.  I should be discharged from both Physical Therapy and Occupational Therapy this week, and that makes me VERY happy. 

Thursday, June 7, 2012

You know you're starting to feel better when... start to pluck chin hairs again. want to make an appointment to get the carpets and couches cleaned. wear ALL your underwear again. takes less than an hour to shower, wash your hair, and get dressed.
...physical therapy is only a minor bother now. crave (well, really wish you could eat it right now) chips & salsa, mushroom/sausage pizza, a macadamia caramel cluster from Costco. wonder if you could handle a trip to Walmart without using a wheelchair--and would it be worth putting on makeup and real shoes? wake up in the morning and you're sleeping on your favorite side--and it only hurts a little. can laugh out loud, sneeze, and cough without holding your tummy. want to get in the car and take a long drive with the windows down. start making a grocery list again. can read books and magazines without getting nauseous. can brush your teeth without getting nauseous. start checking Facebook. want to write thank-you notes. want to read your scriptures. don't care if someone sees you shuffling to the mailbox in your slippers. want to sit at the table and have a blessing on the food when you eat dinner. don't dream about hospitals every night. want to sing again.

Monday, June 4, 2012

A little piece of Freedom

Friday, June 1, was not only my sweetie's birthday, but it was the day we finally got to visit with Dr. Scaife, my whole month after the surgery itself.  I wish I could say that I was peppy and healthy and leaping tall buildings, but the truth was that Dean wheeled me from the valet parking at Huntsman to the elevators and down the long, long hall to the clinics.  My legs are still pretty wobbly and I knew that jaunt would be taxing.  Lindsey joined us and we waited almost TWO hours to talk to Dr. Scaife.  I had my list of questions and requests, and I'm happy to say that she granted all my wishes.  I am now "baggage-free"--no more drains or PICC line, no more TPN feedings through the night!  I feel I can really move forward, even though this means I am in charge of my own nutrition...a scary thing since I believe my stomach is the size of a pea.  It's hard to eat and drink normally; my tummy rumbles and rolls, I burp constantly, and sometimes I literally have to clench my teeth to keep everything down.  I have my good days and bad; the bad is when I spend from "dinnertime" (loosely-speaking) to bedtime feeling like a butter churn.  The good days are when I am comfortable and feel energy from a glass of juice or a piece of grilled chicken.  Ah, to eat pizza again!

I am so grateful to my wonderful "nurses", Lindsey and Dean.  Lindsey was a stalwart--here in the morning to unhook the TPN, here at night to mix the formula and hook me back up again.  I miss her and the little girls and their "normalcy" in this sick house.  Dean was the drain emptier (a gross job) and finger pricker (for blood sugar tests) and the "keep the house going" guy--doing laundry and dishes and general pick-up without a word from me.  My birthday dinner was wonderful, thanks to Lindsey and Aaron.  Delicious food, a candle in my strawberry shortcake, a chorus of "Happy Birthday" from ALL my kids & grands (even Chelsea's family via Face Time).  I can't say thank you enough.  I'll be forever thankful.

Now, to build strength.  I discovered that I lost another 15-20 pounds since May 1, and when I look at myself, I'm a little alarmed.  My face is thin and I have a whole new batch of "pain wrinkles" (especially when I clench my teeth).  My perpetually "fat" calves have wasted away to nothing--no wonder I'm wobbly.  But, every day gets a little better.  The fact that I've been able to sit here at my computer and update the blog is testament to that.  I can finally see the sunlight and actually enjoy it.  What an ordeal!  Remind me never to do that again...