Holiday Bliss

Here I am again, a week after the infusion and two days after Christmas, and all is as it should be in life.  I have felt no ill effects from the infusion, which I must admit is a blessing as well as a worry--how could something that is supposed to be killing the bad guys leave me feeling pretty normal? Is it working? Is it fighting & destroying like it is programmed to do? I pray every day it is. I give my body its daily pep talk & encouragement, hoping and praying that my little army is further strengthened to complete its mission & press forward.
Christmas was (and continues to be) a wonder. On Christmas Eve, I received a surprise gift that was made possible from a number of family members & friends. As I read their names from the card that came with the gift, I could feel their individual love for me. It was overwhelming, to say the least. My sweet kids wanted me to have an iPad to take to treatments & doctor appts and "put out the word" for donations to the cause. Immediately, responses came pouring in--generous & kind & loving. The dream of the iPad was soon realized, and still the donations were coming in. Lindsey said it was an amazing experience for her to see how willing these " angels" were to give & give some more. Soon there was enough for generous gift cards to our local gas station & grocery store, and still more to add to a "cash box" for bills or whatever. I was completely speechless and absolutely humbled to be on the receiving end of such a glorious show of love. The blessings were not just the tangible ones I could hold and enjoy, but the great swelling of gratitude I felt for my precious family--how lucky I am to have this circle of love around me each and every minute. Wow. What more can I say, than thank you, thank you, thank you...

IPI Infusion, No. 2

Today is my 2nd IPI infusion at the Hunstman Center.  I know I've been absent from the blog for three weeks, but have been enjoying getting ready for the holidays and Chels and her family coming to stay for a while.  I haven't experienced any of the awful side effects--at least not to any degree that I couldn't carry on.  Itchy skin in places (could just be the dry winter skin syndrome and not a skin rash side effect) and the same ol' bowel troubles I've had since the Whipple surgery.  I get tired around dinnertime, but who doesn't, right??  So, things have really been okay.  The only thing I'm worried about with this 2nd infusion is that I'll get "double whammied" since I got off so well with the first...and here we are, only six days from Christmas.  That would NOT be the ideal.  But, I'll deal with that if and when it comes.
Chelsea is going with me through this long day of lab tests, a visit with Dr. Grossmann's nurse, Carolyn, and then the three-hour treatment.  We'll take our snacks and our projects and probably watch a little TV, but mainly we'll just relax and enjoy the view from the Infusion Center of the beautiful snow-covered valley.  It's cold today, but I know it will be warm and cozy there.  I'm grateful to Rob for holding down the fort here, which includes care of the three littles and the two dogs, and to Linds for doing chauffeur duty after school.  We are also receiving a meal from our neighbor tonight and that will help immensely.  Life is good and I am blessed.
I'll try to post again in a few days, just to report how things are going.  The holidays are in full swing, so I'm trying to get myself pulled together and get things done.  The gift-giving is meager this year, but no one seems to care.  We're together and that's what really matters any way.

Medicines

First infusion of IPI is done and over.  Huntsman's Infusion Center is such a beautiful place--recliners, TVs, big picture windows looking out over the Salt Lake valley, the best staff ever--it's too bad you only go there if you're sick.  Once again, I kept thinking over and over that we purposely allow someone to put a needle in our vein to pump toxic chemicals through our body--we actually GO to get it done and PAY for it, too!  But, it's worth it if that nasty medicine will do its job and KILL, KILL, KILL the cancer.  I'm chanting and praying and being positive about the whole situation.  It will work, I know it.

We arrived at Huntsman yesterday morning at 7:30 AM and didn't leave until 12:30 PM.  Long, LONG wait to get the labs back from my blood work so the pharmacy could mix the IPI for me personally(what a concept, one I hadn't thought of before...), then 90 minutes of infusion (vital signs were taken every 30 minutes, so time seemed to fly), then another hour of "observation" after the IV was taken out.  Lindsey and I were slap-happy-silly by the end, talking about Christmas and cute kids & grands and crazy life, and I know the laughter, prayers, and priesthood blessings helped calm me and give me courage and keep me smiling.  Laughter is truly the best medicine and doesn't have to be injected, tolerated, or paid for.

No side effects yet.  I'm good to go.

New Adventure

I go for my first infusion of Ipi tomorrow morning at 7:30 AM.  Too early for me, but I guess it's better than waiting around all day for it.  Dr. Grossmann said, "It's a three-hour process, so bring a buddy and a book."  My buddy is Lindsey, bless her heart.  My book...I'm still deciding.  Possibly "Silence of God", an historical novel about the first family of Latter-day Saints in Russia.  I've had it checked out far too long and am only on Chapter 6.  I've had a few other things to think about, I guess.

I'm nervous, but just of the unknown.  I'm still hopeful and prayerful.  I know all will be well.  As Marilyn, one of the girls at the reception desk for Dr. Grossmann, said when she called with the appointment, "This is the start of something you haven't done before, so look at it as a new adventure."  Right.  Here we go...

Tails & Tales

Part I - Tails:

We have a new puppy!  His name is Einstein.  He's a poodle/terrier mix and he's about 7 1/2 weeks old.  Right now, as I type, he is whining and yipping, mad about being "behind bars" in the kitchen, where we have puppy potty pads spread all around (yet he still manages to pee on the tile).  We brought him home from St. George the weekend before Thanksgiving.  We also brought my mama and her little dog, Chester, home with us to share the holiday.  The older and wiser Chester wanted very little to do with baby Einie, and after a few growls at each other, they were, at least, tolerable acquaintances.  We are learning as we go how to train this baby dog.  For many days, I was getting up every two hours with him at night, to let him go potty and get a drink and chew on a toy and then snuggle back to sleep.  Last night, my hubby had the brilliant plan to put his crate (minus its door) in the kitchen with a bowl of water and the ever-present puppy pads, along with his new favorite toys, and just let him cry himself to sleep.  We listened for a good 45 minutes, holding back from rushing to his aid, but he slept all night! (at least, I didn't hear him whine until my alarm went off at 5:30)  Tired of cleaning up messes on the carpet, he is now quarantined to the kitchen until he is trained.  And what do you know?  He's gone on the puppy pads today better than the whole past week of "accidents".  He's even whining at the pantry, where he knows the treats are doled out when he's a good boy.  It's hard to hear him cry, but he'll get it.  And I still snuggle him when I need a break and a little rest.

Part II - Tales:

Thanksgiving was wonderful, as usual.  Besides Mom (and Chester), we also had Chelsea & her family (and their dog, Scooby) with us for dinner, plus my brother and nephew, and then enjoyed Aaron & family and Lindsey's delicious pumpkin pie later that evening.  A special day.  I love my family.

The day before Thanksgiving was another story--stress and anxiety and not-so-good news.  I spent the entire day from 7:30 AM to 5:30 PM at Huntsman, where I had a PET/CT scan, lab work, a brain MRI, and a doctor consultation with Dr. Grossmann.  Mom & Chels were with me for the boring scans part and Lindsey joined us for the doctor visit to get the results.  I was supposed to have these scans in December as part of my 3-month regimen, but about three weeks ago, I discovered a new lump in my groin.  It was painful and swollen at first, but gradually the swelling went down and there was no pain.  The lump, however, remained.  I called Dr. G and he wanted to see me to do a needle biopsy, which was diagnosed right there in the office as melanoma.  I was a mixed bag of emotions - sad, disappointed, discouraged, mad - but also, resigned to the fact that this disease is never going away completely.  Dr. G was very optimistic at the end of that visit.  He said this was a recurrence with a "lower-case 'r' instead of an upper-case 'R'."  He ordered all the scans and I knew we had a plan.  That it had to be done the day before Thanksgiving was unfortunate, but I was grateful to have all three of my girls with me.  I must admit that one of the most stressful and painful parts of this disease is having to tell people the bad news of recurrence.  When things are going well, people just naturally assume that I am cured and things are in "remission"--but melanoma has no remission.  The little buggers play hide-n-seek and come out in the strangest places at the strangest times.  So far, I have not made it past a 3-month scan.  Maybe I never will.  But, thank heaven, I have Dr. G who keeps me from putting my head in the sand and letting the waves of despair crash over me.

When the time came to get the scan results from Dr. G at the end of the day, I was nervous and tired.  It didn't help that an oncology resident (who still needs some "bedside manner" training) came in to see me first.  After asking me a bunch of questions and feeling the lump in my groin, he asked, "So, do you want to know the results of your scan?"  Well, duh, that's why we're here.  No, actually, I was there so that Dr. G could give me the results, but I figured this guy could at least break it to us gently.  No such luck.  He very matter-of-factly said, "You have 4 tumors: the one you can feel in the groin and three in your liver.  You also have a small spot under your collarbone, but I couldn't feel that one on examination."  All I zoned in on was "tumors...liver."  Scary.  Not good.  This sounds more serious than any others I've had, even the one near my stomach.  He proceeds to bring the images up on the computer.  He doesn't talk much and when he does, to me it sounds like doomsday.  Nothing cheery or hopeful, just the facts, ma'am...and those facts aren't too encouraging.  Mom and Chels sit speechless and I don't dare look at them because I'm sure they're feeling the same hopeless and helpless vibes I am from this guy.  I'm glad when he says he'll be back with Dr. G and leaves the room.  I am weighed down by the news.  But, then in comes Lindsey, and soon, Dr. G in his snappy little bow tie and his soft handshake, and I feel better, like my friend has finally arrived and he'll tell me the news again, which he does, and it seems so much less weighty and sad and so much more manageable and doable, especially in light of all I've gone through in the past 19 months of my life.  I remember bits & pieces - mostly the encouraging bits - like, "On a scale from 1 to 10, this prognosis is a 3," or "I have a Plan A, a Plan B, and if we need it, a Plan C; but, I'm pretty certain that we can accomplish what we need to with Plan A and/or Plan B."  I am instantly more hopeful.  I love Dr. G.  (I hope the other guy was taking notes!)

So, the plan is to begin immune therapy, "Ipi", which is Ipilimumab/"Yervoy".  According to my Stage IV melanoma treatment sheet, "this is given as an IV drip over 90 minutes every 3 weeks for 4 doses.  Plan on 3-4 hours in the infusion room for each visit.  Ipi takes the 'brakes' off the immune system so that it can recognize the cancer and destroy it."  Side effects include diarrhea (just what I need when I'm still healing from the Whipple surgery), malfunction of the pituitary gland, rash, and fatigue.  Scans will be taken again after six weeks to see if there is any change in the tumors, and if all is going well (that is, if I am tolerating the Ipi okay), we'll go ahead with the rest of the doses.  That's Plan A.  Plan B involves a new trial that Dr. G is starting up in December with a new anti-body, called PD-1.  If we need Plan B and I am accepted into the trial (either here or elsewhere in the country), that will follow the Ipi treatment.  I love that Dr. G doesn't sugar-coat anything, but gives me statistics, side effects, pain or ? management, long-term results, short-term appointments & doctor visits, etc.  Everything I need to know in an honest, precise way, but always with HOPE in his voice that I am going to be one of the survivors.  Yes!  I am!  He wanted the girls at the reception desk to make my first infusion appointment for this week, but when we finally finished with our visit, their office was closed for the night and the long weekend.  I haven't heard from them today (yet), so I will call them in the morning to see what the plan is.  There is always a plan!--from Heavenly Father's plan for every facet of my life to Dr. G's plan for this trial I have to endure.  I love it!

So grateful for what I DO have, for the health I DO enjoy, for the relationships I DO have that are precious to me, for the hope I DO have in my Savior's loving kindness to follow me all the days of my life.  With that sweet knowledge, I can move forward and conquer this Goliath that looms over me.

Giving Thanks in all Things

I love Thanksgiving.  Not just the holiday (but, I admit, it's a favorite), but the focus on gratitude and being thankful.  Thank FULL.  FULL of thanks.  So full of thanks that there is no room for complaint or ingratitude.

I am thankful for my beautiful family.  My hard-working hubby, my talented and happily-married children and their wonderful spouses (celebrating anniversaries this month - 10 years for Aaron & Lindsey, 8 years for Chelsea & Robby), my brave and funny teenager, my hope-and-faith-filled momma, my loving and loved siblings, and all the rest who give me such support and strength.  You bless my life more than I can ever say.

I am thankful for miracles.  I am blessed daily by God's mercy.  He looks beyond my mistakes and lifts me from the black holes I continue to dig.  He is quick to hear my prayers and answers them in diverse ways.  There is nothing He cannot do, and I keep hopeful that He will heal me.  My days are numbered by Him and there will not be one less than what He already sees.  Through his mighty Atonement, I am blessed by His grace, as imperfect as I am.  What a miracle.

My life is fairly routine again, and that, too, is a blessing I am thankful for.  I can drive Janessa to and from school, I can go to the grocery store and gas station, I can go out to eat on Saturday nights, I can visit neighbors and friends, I can work a few hours a day, I can vacuum and do dishes and laundry, I can hug my family and talk on the phone, and I can sing.  There is much more on the "can do" side of the list than the "can't do" side, and for that, I am grateful.

 Doctor's appointments and new scans are just around the corner.  Tomorrow, I go to Dr. Bradley to get my right ear looked at.  It feels plugged, possibly from dry skin (from the past radiation).  When I sing, my head buzzes or feels hollow, depending on the pitch.  So, a good clean-out may be in order.  If it's that easy a fix, I'll be very grateful.  From there, we'll see what the next month brings.  Whatever it is, I can handle it.  I will not be alone.  I am full of thanks.

(Pictures taken October 2012)

Great is Raining on Me

(Like this song lyric...just been waiting for a good time to use it!)
It's been five and a half months since my Whipple surgery...and I realized that I am once again SICK of hearing my own complaints.  If this is how the rest of my life is going to be, then so be it.  From now on, I am FINE...really, truly fine.  And with autumn upon us, "great" really is raining on me today.
I had a great few days with my Chelsea and family.  She was busy "working", so I didn't see them as much as I would have liked, but when we were together, it made me smile.  I've missed them.  I miss all my big family.  We got to spend a short hour with Aaron and family, too, and I loved seeing those sweet little cousins laughing and squealing with each other.  All my grands are growing up so cute and smart!  Warm fuzzies in my heart...
I'm trying chorus again tonight.  We're starting to rehearse "Messiah" for the Thanksgiving weekend concerts.  I can do this.  After all these years, most of it is memorized.  It makes me happy to see notes from past performances:  "SMILE when you sing these words!", "Don't lag behind...be energetic!"  Good advice then, great advice now.

We have a little school break this week.  It will be nice to sleep in longer than 5:45 and do something "great" at least once a day with my high school girl.  'Course, she has her own agenda, too.  We'll see if she can squeeze me in...
(Picture:  Chelsea & Janessa at Bryce Canyon several years ago)

Beautiful Words in any Language

I tried to do a chorus rehearsal last Tuesday for concert weekend and realized that I didn't have the stamina yet.  I mostly mouthed the words as everyone around me belted out the great words and music.  It was strenuous singing, even for the hearty.  For me, with the strength of a kitten as times, it was frustrating.  Need to get stronger to be a better contributor to the chorus...and to life, too.
Regardless of my inability to sing, I was moved by the words in this beautiful piece of music.  I guess I should say the "translation" of the words, since we were singing in German.  Without the translation, it certainly didn't mean as much to me.  Here's just a sampling:
LOBGESANG ("Hymn of Praise") by Felix Mendelssohn
"Let everything that breathes praise the Lord"... I am breathing--that much is sure.
"Praise the Lord, my soul, and forget not the good things He has done!"... never, ever forget, my miracles and hope.
"He numbers our tears in times of distress" ...one of His many blessings.
"Blessed are they who put their trust in the Lord!  Blessed are they who put their HOPE in Him!" ...yes!
"Now let us all thank God with heart, mouth, and hands,
Who in all adversity, turns graciously to us and does so many good things;
From childhood on, He has kept us in His care and done good to all..." ...tremendous gratitude.
"Hallelujah, praise the Lord!" ...Maestro Fischer pronounced that the greatest word in all the world is "Hallelujah", that we should sing and say it with enthusiasm and thanksgiving and love.  I agree.
In any language, I thank God that I am alive and acknowledge His blessings in everything around me.  He is truly a God of Love.

NOT Superhuman

Sick.  All week.  I think I overdid last week's crazy schedule when I thought I was Superwoman...not.  I caught a cold--the first one since March 2011--which turned into a nasty cough.  Probably bronchitis.  My tummy is also unsettled.  I feel like a baby.  I eat...and it comes back out ten minutes later (sorry for the visual).  I have to call on that one in the morning because it is NOT normal.  The hard part is that I think I'm going to have a better day and then it hits again...bam.  Puts me right back on the couch in my jammies.
Through much prayer (and no breakfast), I was able to go to the temple with Patti this morning.  It was truly a miracle.  Enjoyed every second.  Then, I get home, and you guessed it...bam.  Back on the couch feeling sorry for myself.  No chorus this week.  Next week is performance week.  Can I do it?  What drug(s) will it take?
Prayer:  "Grant unto all those here today a special blessing, according to Thy will."
Please?
Thank you.

(Picture:  me dressing up for a part in a play - I was the "80's Girl", if you couldn't tell.)

Grateful...and cranky

I'm sorry I complained about insurance and all that jazz in yesterday's post.  I should have been jumping up and down with joy and gratitude...but I have a weird pain that is making me very cranky. 
I pulled weeds along the side of my fence a few Saturdays ago, and even though I sat in a chair instead of leaning over or sitting sprawled on the cement, every once in a while, when I pulled a little too hard, I actually heard a "POP" on my right side at the top of my rib cage.  Should have stopped at the first POP, but didn't.  That hurt for a few days, but finally went away.  Then, Monday, I had had it with my filthy carpets and moved half of my furniture to the other side of the room to do half of the carpet at a time.  Our little carpet cleaner is actually easier to maneuver than our big heavy vacuum cleaner, but once again (minus the POPs), I have this pain above my rib cage...and it's making me nuts.  Feels fine when I'm standing or walking, but I have to gingerly lower myself into chairs or onto the bed and then deal with the sharp pain for a few minutes.  Didn't sleep well last night.  Felt more cranky when I got up before dawn.  There's still half a room to clean, but I don't have the strength to do it.
So, ignore the complaints and attribute it to the pain talking--and know that I am beyond grateful for the miracles that have occurred in my life the past eighteen months as far as medical bills and insurance goes.  There are still those who contribute anonymously to the Medical Account my kids set up in St. George, for which I am so thankful to you who remain nameless and faceless.  Believe me, I see your kind faces every time I can pay even $3 on an outstanding bill, because that $3 can go now go elsewhere (like in the gas tank).  I am also grateful for those who have come to me with a request to pay an entire bill, which makes me all wobbly inside and brings me to tears, because those are the statements that keep me awake at night.  You (and you know who you are) have been my miracle workers and given me one less thing to worry about, which also causes me not to be able to heal as quickly.  I'll never have enough words to say, "thank you", and please know you are appreciated.  I continually ask God to give YOU the blessings you need as you have shown such kindness and generosity in helping me. 

Now We Celebrate

The "official" results of last Thursday's scans, in Dr. Grossmann's own words, "Your scans look great."  Now, I can breathe easier and relax.  We love coming away from appointments with optimism and hope beyond belief and smiles...and those magic words, "See you in three months."  I am officially NED, and wow, it feels great.
I do have one reactive lymph node on the left side of my neck that Dr. G could feel on examination.  "Reactive" means it acts like a normal lymph node, similar to one that might be affected by a cold and other infection.  (Guess I'd better get my bad tooth on the left side fixed once and for all, in case that's what is causing things to show "red" on my scans...)
I also have to go back on the Lovenox shots twice a day (I cut down to one shot without permission because I was getting a huge bruise every time I brushed against even the smallest thing) and eventually, I'll go back to the Coumadin pills.  The clot is still in the liver and Dr. G. is hoping it will be re-absorbed soon.  Dr. Scaife seemed to think it would be, so that's what we'll hope for, too.  He did say I would probably be required to stay on the blood thinning meds for a year because the clot is still showing up on the scans.  Just one more "perk" to such an extensive surgery.
I have also been wrangling with insurance the past few days.  I'm not very analytical, so it's hard for me to wrap my brain around numbers that look foreign and confusing to me.  Bottom line is that I am now on three different "payment plans" and it will be a juggling act every month to figure out how they'll get paid, especially now that I can't work as much.  For every bright shining moment, there is usually a really dark nasty one lurking on my office desk trying to mess up my happiness.  Well, not today, buddy!  And even though I've had to talk to three different companies about insurance issues today, I refuse to let them take my light away. 
NOW, we celebrate...

(Picture:  Little Me at 8 years old.  I was in the third grade.  I had been sick for a few days before this was taken, so I look paler than usual.  LONG, long ago...)

Blessed again

Just a quick post about last Thursday's 3-month scan:  I was in the blood lab for an hour...and in the scan room for five minutes.  Enough said.  Poor veins.
I had a follow-up surgery appointment with Dr. Scaife Friday morning.  Lindsey was with me as my support and was having "good vibes".  I needed them.  I was nervous.  I wanted to know that things were really healing the way they should and that all was well.
I love Dr. Scaife.  She is a very visual person.  So, when she said that I still have the blood clot that is causing some of the abdominal pain, especially after I eat, she compared it to something like road construction--the blood is trying to move through that blocked vein instead of seeking out the detours.  "They'll get it soon," Dr. Scaife said.  "They'll find the alternative routes."  Yay.  She also compared the healing of this surgery and the way my body has to adjust to a giant spider web that has to be "swept away" for full healing.  When I first came out of surgery, that spider web was like one you'd find in your attic after years and years--thick, white, and hard to sweep away.  But now, after four months, the healing process is like a spider web you might find in your kitchen one morning.  You look at it, brush it away, and think, "Who did that in the night?"  They'll get easier to sweep away as time goes by.  Love the imagery!
She also made a copy of the "preliminary report" of my scans (apparently, the "final report" means that two radiologists have looked at the scans and given their assessment--at this point, only one has done so, but by Tuesday's appointment with Dr. Grossmann, it will be a "final report") and read through a bunch of the medical jargon, which basically says I have no evidence of disease right now.  Hooray!!  She said, "I'm not an oncologist, but this appears to be good news, and I wanted you to have that for the weekend."  What a blessing.  I am flooded with relief.  My weekend really will "feel" better with this news.
I'll post again after the Tuesday appointment. 
Prayer works!
Miracles are all around us!

Just around the corner

Today, Janessa is at the high school for sophomore orientation.  School starts in less than a week.  Tomorrow, a more experienced senior friend will escort her through the empty halls to find the best path from class to class.  I know it will ease J's nerves.  Thursday, she will also get a new hair-do, thanks to one of her awesome Young Women leaders.  I will merely sit back and watch a pro at work (and not have to listen to complaints after!).  Friday, we will make a quest to finish up clothes shopping...and then, we're ready.  It's just around the corner and I have mixed emotions.
She and I have shared a lot this summer.  I'm grateful that she is the kind of kid who is content to fire up her laptop and write stories all day long.  She is also semi-permanently attached to her iPod, where she watches YouTube "vlogs" (video blogs), checks her Twitter account every five minutes, catches up on reruns of "Reba", and follows her "boys" as they perform at concerts and get mobbed by paparazzi & crazed teenage girls.  Somedays, she and I skip putting on makeup or doing our hair and just watch Netflix movies.  We've slept in, stayed up late, had Panda Express take-out a few times, and seen a few new release movies in the air-conditioned theaters.  If not for the fact that I've been trying to heal from surgery through all this "fun", it would have been a perfect summer.  I think I would have gone crazy without her.
Now, she'll go back to school and I'll try to put in more time at my job, chorus, church responsibilities, and melanoma worries.  Two days after school starts, I go in for my quarterly scan.  I don't know how to feel.  I'm honestly afraid that if something else has grown, I won't be able to handle getting it taken care of.  I don't feel physically ready for another surgery and we're definitely pushing the envelope of medical expenses.  I'm already on a payment schedule that will go into 2014--and no doubt there will be more added to it in 2013-14.  What do you do in those situations?  There is no light at the end of the tunnel because the tunnel goes on for miles and miles and miles.  On our old insurance, I was "paid up" by this time last year.  This year, though our statements say differently, we are not.  Don't get me started...it only gives me a headache.

I know nothing stays the same.  Change is constant.  Soon, the weather will turn cooler, I'll start making soups and casseroles again, I'll (hopefully) sleep better, and our carefree summer will be a wild ride of high school comings & goings.  It's just around the corner...

Caring Givers

Been thinking a lot lately about those who so willingly take care of others.  At some point in our lives, we are either the giver or the taker.  After being the "taker" for so long the past year and a half, I'm falling behind on being a "giver".  But, I still recognize those around me who are pros at it.
My siblings are good at being "givers".  My sisters fly in from their homes far away to take care of family, even doing the messy stuff that the rest of us would rather not deal with.  My brother is the constant presence in Mom's life and home, giving what he can to keep balance between healing and well-being. 
My hubby is a "giver", even though it means spending far too much time at work, in the heat, doing the mundane and not being appreciated.  My grands are "givers", though they're too young to realize that just the sound of their tiny voices makes my heart sing.
My neighbors and friends are "givers", whether it's  a welcome meal, a happy visit, or flowers that have added charm and beauty to my front yard this summer.
My children are "givers", though they worry far too much about me.  Most of the time they are more adult than I am, and it humbles me.  Aaron is and always has been my rock, a steadying force in his quiet way, and Chelsea would do anything to make things better and more beautiful and happier.  Janessa is my link to youth, as she shares her teenage life with enthusiasm and hope.  But most of all, I will be forever grateful to Lindsey for her sacrifice of time when she was my chief nurse.  There was no one I counted on more, no one who put the "care" into "giving", day after day, hour after hour, in spite of her own frustrations and worries.  All these people surrounded me with love and gave me the will to go on.  I pray I can live long enough to "pay it forward".

I went to chorus Tuesday night and reconnected with another chorus member who is dealing with her aging husband and the challenges he faces every day.  She said she was glad to be at rehearsal--alone--having made arrangements for her husband to be cared for while she was gone for a couple of hours.  I could see the weariness in her face, hear it in her voice.  And yet, there was that underlying love that she could not hide, the love that compels us to do hard things, to be involved with something we never dreamed we'd have to face, and to move forward when everything around us tries to push us back.  Truly, caring givers are ministering angels on this earth.  May they be blessed in this life...and the next.

(Picture:  Mom and Dad, married August 15, 1958, high school sweethearts--love them so much!)

Shaky Business

In many ways, I'm back to doing things I was doing before the surgery, but the downside is that I'm still a lot more fragile than I used to be.  I don't want to be--I don't like it all--but it is what it is.  I went to church Sunday and stayed for the entire 3-hour meeting, and by the third hour, I was shaky.  Even my voice was shaky, which is weird for me, the one who can usually project to the back of the room if needed.  Last night, we had family night with A &L and the girls and I tried to sing with them, but I sounded like one of the Munchkins.  How will it be to go back to chorus next Tuesday night?  I hope it will just take some practice.  I came home from church Sunday, had a bite of lunch, and tried to start a new library book.  But, before I knew it, I was sound asleep, worn right out.
The sleepless nights continue.  Many suggested I try Melatonin, which I have, and it allows me to sleep for about 2-3 hours...and then I'm awake.  I find myself pacing the perimeter of my TV room in the dark, just to relieve my restless legs, and make myself more exhausted.  Last night, I rubbed lotion into my legs and arms and then laid down under the fan.  That must have done the trick because I don't even remember Dean going to work at 4 AM.  I woke up to my alarm clock (J needed to get yearbook pictures taken at the school this morning) and just wanted to stay in bed.  I know it will get better one of these days, but it sure is frustrating.  Sometimes, I just want to put on my shoes and go walking at 2 in the morning.  Weird.  Wonder who else I'd meet, sleepless in the neighborhood.
On a good note, I'm working more.  My feet swell up like little sausages, sitting at my desk, so I have to take a break more often.  But, that's okay.  It gets me moving and helps me remember to fill up my water bottle, rotate the laundry, check in with the family, and put my feet up for a few minutes.  Seems to help.
I'll be glad when I don't have any issues to report.  Don't you get tired of hearing me moan and groan?  I sure do get tired of it.  I've got to get out of the "shaky business" and into the "fighting mode" again, as my 3-month scans are just around the corner.  I think I need (want) another vacation before then.  Where's that sack full of gold coins?

Vacations

I know God gives us strength when we need it the most.  I started to feel semi-"normal" about the middle of July--able to eat a little more, do dishes and laundry (yipee...), move better, etc.  It was just in time because Chelsea and her family decided to come celebrate Pioneer Day (July 24 here in Utah) with us and I couldn't have done it without that extra boost of energy power!  First, Chels and I were able to go to our Salt Lake showing of the Broadway cast in "Wicked" at the beautiful, historic Capitol Theater.  I've been keeping mum about these tickets since about February or March because I could only afford two and I knew there would be moans and groans from those left at home.  When Chels called and said they were coming for the big parade and fireworks held on Friday, I asked her if she could come early and go to the play Thursday night.  What a thrill!  It was an amazing show!  The leads were wonderful and so talented and gave me goosebumps.  I loved the music, the set, the costumes, the humor, the whole thing!  It was a treat.  Friday was stressful, just like always, because we have to be at certain places at certain times and the traffic is horrendous and it's hot and everyone is grumpy (especially me) and then, of course, I'm tired-er than usual and have more pain than usual...blah, blah, blah.  I'm sure my family is as sick of me being sick as I am.  But, all in all, we enjoyed the parade, especially the entry called, "The 2000 Stripling Warriors", from the Book of Mormon account of the 2000 young men who fought against their enemies and "did not doubt" the truths their mothers had taught them.  It was very emotional to see our day & age's 2000 stripling warriors, dressed in their tunics and armed with their own personalized, wooden staffs, ready to battle against evil.  I'll admit I got teary.  The trek up the hill to see the fireworks was hard and I got winded and sore, but the fireworks themselves were fantastic, as usual.  Just love our vantage point with the "bombs bursting in air" right above our heads.  Ooooh, ahhhh.... Saturday night, we went to A & L's to watch their neighborhood bike parade.  Some of the neighbors played patriotic music from their car stereos, as the kids passed by once or twice (or more) on their decorated bikes, scooters, wagons, rollerblades, etc.  It was wonderful and the kids were a hit.  Our Ally & Avery threw candy suckers like in the real parade, and that was a bonus, especially to little Knox, who kept picking them up off the grass and chomping them.  After the parade, Linds & Aar made homemade ice cream, which was a real treat.  Yum, raspberry hit the spot.  Monday morning, we were off with the Stephensons for St. George to spend a few days before the Scentsy convention in Las Vegas.  My energy level was still good and I was so relieved.  There is always pain at night, but I slept pretty good and was able to keep it under control with ibuprofen.  We enjoyed our time with Mom and Chels & family, and then we were off to the lights of Vegas.  Convention had its ups & downs.  Lines were long that first day and we were all exhausted, but what a rush to be with 11,000 Scentsy consultants!  I had a few melt-downs (mostly by being frustrated with my family), but all in all, it was a wonderful few days of doing completely different things than we do in our everyday life...going to shows, walking Fremont Street, eating way too much in buffets, people-watching.  Convention was motivating and a little intimidating, too.  I wish I could be better at this job and not have to worry about anything financial.  We got lots of free product and heard motivational speakers whose words are still rumbling around in my head.  Hope I can act on them.  Came home tired, but happy.  Not ready for real life, but today is August 1 and I've made some goals to get back into my regular routine.  I guess if we were always on vacation, we wouldn't appreciate these times when we just have to deal with slow computers, too many bills, cleaning out the fridge, and getting a haircut.  I'm so grateful that I can finally say, "I guess I'm going to make it after all!"  Whew.

(Picture:  my silly girls, Chelsea and Janessa)

Sleep Deprived

Lately I have been fighting with myself to get more sleep at night when it's dark and normal people are supposed to be asleep.  Of course, I have a few things working against me--pain in the belly, not able to sleep comfortably on either side, the whir of a mind that wants to worry about bills or decide on a good food menu that will not cause added pain or a million other things.  My nightly routine has been to take a Lovenox shot about 10 PM, wait a few minutes, take two Motrin with a teaspoon of yogurt, wait a few minutes, then climb into bed with the fan blowing right on my feet and fall asleep.  Up until the last few weeks, this was working pretty well, but whether it's due to the more food I'm eating (more to digest and move through my belly's new course) or the additions to my schedule (shopping, etc.), I was not sleeping well.  I'd go to bed and a half hour later (or less), I'd be up to sit in the recliner, my back aching, my legs restless, my tummy hurting, my head buzzing.  I was afraid of keeping Dean awake with my constant movements.  I'd do laps around the TV room.  I'd get a drink (a sip, really) of water and then burp for 15 minutes--painful ones that make me squint and grit my teeth.  Last Saturday night was the worst yet.  I stayed up until 11, hoping to be more tired, but was up again at midnight.  I laid back in the recliner, hoping to ease my backache, but my stomach hurt.  I leaned forward in the recliner, but then my back would hurt.  It was about 3 AM before I finally dropped off in the recliner, and when the sun came up, I crawled into bed until about 10.  I didn't think it could get any worse until Sunday night.  Same thing--up, down, up, down, walking through my dark house like a zombie, everyone else sound asleep.  When I finally got to sleep, it was 5 AM!...and I slept until almost noon.  Not normal at all.
Made my way to Walmart yesterday and bought Motrin/PM.  It had to help or I would go crazy.  I really wanted to crawl into bed about four in the afternoon and take a big long nap, but my instincts kept saying that if I resisted, I could fall asleep at a normal time and sleep through the night.  We had a huge rainstorm that cooled off the night air and the dark clouds made me sleepier.  I ate less dinner, not wanting to add to the stomach pain, and at 9:30 I began my usual night routine, telling Dean that I was going to be in bed by 10 and stay there!  I took the Motrin/PM and felt myself relax the minute I hit the pillow.  I woke up thirsty at 2:30, but got a little water and rocked in the recliner for a few minutes.  J was at a friend's house, so I got into her empty bed and slept until about 4:00.  Went back to my own bed, put in earplugs (Dean was snoring in my ears), and was back to sleep in minutes.  I woke up at 9, pain-free and HAPPY.  It was a good night.  Now, if it will only continue...

(Picture:  Chelsea, Laura, and I at the St. George condo eating No-Bake Cookies...maybe 2000?  Fun, FUN times!)

Summertime

Little things have started to improve in the past week.  I can eat more without adding more pain, but sometimes I overdo and just want to burst.  I actually went to a movie and out to lunch with hubby & daughter on Saturday and did okay, but Sunday was half a cup of pasta that just wouldn't sit right.  I've got 17 things on my To-Do list today, but it's almost 2:30 PM and four things are done.  I should be happy for those four things, and I am, but I'd like to turn off that nagging voice in my head that wants the other 13 done pronto.

I'm also working again, finally.  It's slow for me and each day depends on if I can sit in the computer chair for more than an hour.  But it feels good to hear familiar voices on my headset and see the meeting templates and let myself get back in the groove of transcribing.  I'm so grateful for a company that has allowed me to go at my own speed, jump in when my energy allows, and be supportive of those times when I can't even stand to turn on the computer.

I was thinking about family reunions this past week, as we marked 9 years since my dad passed away.  I found this GREAT picture of a family reunion at Lagoon--either Bartschi or Nelson--and I'd say maybe 1968-69??  On the left is my Aunt Marilyn Uharriet and baby Jennifer, me in the orange-ish blouse (I still remember it!), Uncle Raymond Uharriet, Grandma Lillie Bartschi, and in the forefront, my little sister Patti with her blanket.  Look how cute the adults are--I love Uncle Ray's sunglasses and his & Aunt Mem's smiles!  And my sweet Grandma Lillie!  And is that a Kentucky Fried Chicken bucket by Uncle Ray??  Dean and I were talking the other day about KFC's big soft rolls they had when we were young...and how we'd break the rolls into pieces and pour the gravy all over the rolls!  Better than mashed potatoes!  Why did they change that?  We NEVER eat the biscuits!  Aww, summertime memories.  Maybe next summer will be more normal for me than the last two have been...

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.

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.

Behind the wheel again...to 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 driving...no 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 well...it'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.

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. 

You know you're starting to feel better when...

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

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 surgeon...one 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...

Sick Of Being Sick

This is Janessa updating my Moms blog (I'm pretty much just typing what she's saying! (:) This week Mom had visits from home care nurses, and physical/occupational therapy. She has to report every single little pain or problem, so because of that, she had to go to the UofU hospital, Thursday to have her drains checked. One of the two had slowed down to almost nothing. Friday, she had to go back to Huntsman for a CT scan. Even though she hasn't had anything to eat or drink since APRIL 30TH!, she had to drink a bottle of contrast (ICK). Even though it still felt good to have SOMETHING cold and wet to drink she was afraid she'd be sick if she drank it all. The scan showed that the lower abodomen is clear and the pancreas looked "pristine", but it also showed a little pocket of fluid under her surgery incision. So it was back to the U (Lindsey pushed Mom in a wheelchair in the tunnels from the Hunstman to the U) to take out the drain that was empty and put in a new one for the new pocket of fluid. Dr. Hwo, who originally put in the drains, took the time to see Mom late Friday afternoon. Mom and Lindsey were constantly amazed that the team of doctors always seemed to find them, even in waiting rooms and exam rooms! They think a red light must go off somewhere to let them know Moms back in the building. The new incision from the drain hurts, so its making Mom frustrated. She is very sick of being sick. She mostly feels tired and weak. She might get to have real food on Wednesday, and goes back to see the surgeon on Friday. She's greatful for all the family help and prayers. We'll try to update later in the week!

Back to Home Sweet Home

Thanks to my Chelsea for posting the last update.  I knew everyone would be panicked and would want to hear at least the bare minimum of news.
To say that the ER visit and ICU stay was horrendous and the worst pain I've ever had to endure would be sugar-coating it.  It was torture.  My poor sick body.  I'm glad that I missed out on some of it, just by being delirious.  That's a blessing when pain is so hard to wrap your head around.  When I'm stronger, I'll have to relate some of the "loopy" moments--I guess I was quite the crazy woman.
I am home, as of yesterday.  I came home with two drains and the PICC line for TPN feedings.  Things are healing, but oh so slowly.  I have not had food or drink since May 1.  What a wonder our bodies are, that they will continue to keep us alive, in spite of not being able to "eat".  I miss it.  I miss being hungry and satisfying that hunger.  The TPN food is fed to me directly through the bloodstream over the course of 16 hours.  I have not been able to manage nausea very well, but over the last few days, it has gotten easier to keep things down.
My family is wonderful.  My five children have been angels of mercy and the best nursing staff ever.  In the hospital, someone was always with me from morning until about 10:30 PM.  The many trips they have taken over the past almost three weeks to the hospital have been hard on them and their families, I know, but they have been my source of joy.  Dean and Janessa are a working team for keeping up the house and the laundry and the meals.  Our ward family has served in so many ways, it will be hard to give the appropriate thanks, but some day I will try.

I still have a road to travel to wellness.  I'm weak, my poor legs and feet are swollen like little balloons, and the drains are still draining.  But I have no more pain (have been off pain meds for a few days now) and I can shuffle pretty well between the bathroom, the bedroom, and the big comfy recliner.  I can see the light at the end of the tunnel, which was dark and scary just last week.  Thanks to everyone for your continued prayers.  I will survive this...but it will be long journey.

Bumps in the Road

After two days of being at home, Mom started to have REALLY bad pain in her abdomen.  The Surgical Oncologist told her to come into the ER. She started having more problems, like throwing up and not being able to go to the bathroom. Her stomach was filling up with fluid and her heart rate was getting really high so they took her to ICU.

They did a CT scan and placed two drains in her abdomen to get out the liquid. Test results came back to show that the liquid is Lymph liquid and not Pancreatic liquid, like we thought. Almost 5 liters of fluid was drained!! Liquid tested free of infection so we are thankful for that.

She will start PIC nutrition tomorrow instead of a feeding tube (because that was part of the problem of why she was filling up with fluid). She will have a PIC line for two weeks, and the hope is to be trying to eat solid food by the beginning of June!

We hope to be stable enough to move from ICU to Huntsman today. Not sure how long she'll need to stay at Huntsman, but hoping by the middle of this next week she can come home again.

Happy Mother's Day today, Mom! I am very thankful for you in my life. I'm amazed at your strength through these bumps in the road of life.  I pray you will recover fully so we can create more happy memories in the years to come!!! I love you so so so much!

(Blog update by Chelsea. Picture from 2008 at the Villa with Gram, Mom, Lachlan and Janessa)

Update from the Hospital

 

 My Mom has asked me (Chelsea) to update her blog for her.  I will leave all the details for her to write because she will say it so much better than I would!

Surgery went very well, except for the fact that Dr. Scaife ended up doing the longer procedure. This will mean she won't be getting back to her blog or anything normal for longer than she hoped. Drat!

She hopes to be home, in her own comfy bed, early next week.  She is really tired and sleeping a lot. She has pain in her abdomen, but that's to be expected.  She has a beautiful view of the valley and the sun comes beaming through the windows in the afternoon.

Dr. Scaife came in this afternoon and saw Mom sitting in her chair.  She cheered and gave us both high fives and told Mom that she is her favorite patient because she is not laying in her bed all day! Mom just says she has good timing! ;)

I have to go home to St. George tomorrow (sniff sniff), but hopefully we will update her blog soon. Thank you for your thoughts and prayers. She is so thankful for all of you who are cheering her on.

XOXO


(Pictures: Mom before the surgery, Mom after the surgery sitting in her chair, Mom walking down the hall to the nurses station! GO MOM!!,  Sweet "HOPE" rock from Ann.)

Painted and Ready

Monday, April 30, 2012:  We have a plan!  I called the hospital this afternoon and found out I am FIRST on the list for surgery in the morning.  That means I am to be at Huntsman Cancer Center at 7:00 AM, ready to go.  I am definitely ready.  Been ready for a long, long time.  Now that we're in countdown mode, I feel all mixed up inside, but not in a negative way.  Just want this to happen, be taken care of, and be done.  I am not jittery (yet), but feeling calm that all will be well and good.  I know it is through the power of prayer and I am grateful.

I've got most of my To Do list done.  Tonight, my family and I (and sweet friend, Jana, photographer) are going to do some family pictures.  Why not add one more thing to the mix, right?  It will still be daylight with a little cloud cover, so I think it will be perfect.  I know it will be.  We'll make it so.  Other than that, there is a load of laundry to fold and put away and a little hospital bag to pack.  I'd say I'm ready.  More than ready.  Painted and ready! (God bless my angels for the pedicure gift certificate)

Talk to you soon, my friends...

Things that Count

Saturday, April 28, 2012:  Today is my beautiful daughter, Chelsea Diana's, birthday.  Her 30th birthday, I might add.  I think she only gets better with age.  She is very precious to me and I'm grateful that she and her little family are here with us for the next week.  I already feel calmer and more at peace with life and all the question marks of the coming days.  My family is my rock, my treasures, the things that count in my life.  I'm feeling immensely blessed.
Slowly, slowly, my Before Surgery To Do list is being whittled away.  This morning, Dean and his wonderful crew (Aaron and Lindsey and Robby and neighbor/friend, Dave Hale) laid the new sod in our backyard.  Instant green!  Instant happiness!  I love it.  I can see myself sitting out on the lush green lawn in a few weeks with my ice water and a good book.  Pure joy.
The clutter in our home is slowly being whittled away, as well, in anticipation of the community garage sale next Saturday.  While some were hard at work in the backyard this morning, Chelsea and Janessa were going through J's drawers and closet (and under her bed--yikes!) to weed out all the unwanted and unworn that could very possibly be someone else's treasure.  There is a new pile of boxes and bags on top of my own boxes and bags that will hopefully go to new homes to be enjoyed as we have enjoyed them.  What a relief to be taking out inside of bringing in!  Cross that off the list, too.  As we come to the end of April, I'm feeling that renewal of Spring, clearing out the cold of winter and basking in what looks new to our eyes.  It's a good day.

(Picture:  our little family in July of 1982 - Aaron was 2 years old and Chelsea was 2 months old)

Good Signs

Thursday, April 26, 2012:  Today, I feel like Heaven is showing its mighty power.  I love my blog friend, Alisa's, thought that God has the ability to save and cure, whether it happens or not in our own lives.  He has the power.  He can do it.  And it doesn't matter who we are--the best of the best or the worst of the worst, beastly cancer cannot win if it's not in the plan.  He sees us all the same, as His children.  He knows the number of our days.  I trust Him to bless me, every day, and to be there when I need Him most.

Today I was on the other end of the doctor's exam--the supporter, the watcher, the hand to hold.  I went with Dean to see Dr. Robison, our wonderful dermatologist, to have a mole & skin check.  It was kind of nice to sit in a normal chair and not THE CHAIR.  It was nice to not have to disrobe.  But, at the same time, I felt that tickle in my tummy for my sweetheart.  It's scary, the not knowing.  With all the gazillion moles and freckles Dean has, there was only ONE that was of any concern, a little tiny thing on his belly.  Within minutes, Dr. Robison's nurse had the spot numbed.  Within seconds--literally seconds--Dr. Robison had cut it away and stuck a tiny round bandage on it.  I was amazed!  Five seconds!  Of course, now it will go to the lab to be evaluated, but we feel so encouraged.  All the ones we were sure were skin cancer or melanoma are fine, normal, of no concern at all.  We walked out of the office, thinking "that was a good sign!"  It was simple, non-complicated.  Maybe on surgery day...?

Tonight, walking out of a church meeting, I learned that one of my neighbors who was scheduled for an outpatient surgery today didn't have to have it after all; that she had gone to the doctor Monday, where they found that her body had healed itself!  Her mother had come from out of town to be with her for her surgery, and now they were planning to play for the weekend!  I love it.  Tender mercies and another good sign.

I'm not saying that Dr. Scaife will start opening me up Tuesday and find that I've been cured or that it will take minutes instead of hours, but I do believe in miracles.  Always have, always will.  And I'll always celebrate them in other's lives, as well as my own.  They are good signs from above.
(Picture:  Dean and I, ready for Senior Prom, 1975--I was 16, he was 20)

Wait, Worry & Wonder

Wednesday, April 25, 2012:  I am now down to six days and counting until the Big S.  It is torture to wait.  All I do is worry and wonder.  I have really had to shake myself to stop the morbid thoughts, too...the "what ifs".  I constantly pray for peace, for the shorter surgery, the quickest recovery, the strongest heart, the least amount of complications.  It has not helped matters that I've been cleaning out my closets and storage bins to prepare for the community garage sale--I feel a lot of closure as I sift through my "stuff", saying goodbye in a way.  When I get frustrated and discouraged and depressed, I think of President Uchtdorf's latest advice--"Just STOP IT!"  I WILL SURVIVE!  I will come back stronger and healthier and more resolved to live better.  This week, I gave up sweets (again) and started reading & drinking the "Green Smoothies" diet.  I definitely feel more in control without my chocolate and sugar high and I actually like my Green Smoothies.  I take 1 1/2 cups water, add a few slices of lemon (rinds & all--I read that it helps fight skin cancer), a few teaspoons of ground flaxseed, a few teaspoons of coconut milk, and about three handfuls of baby spinach and blend that all up really well.  Then, I blend in a cup of frozen mixed berries and half of a frozen banana.  I get about an 8-9-oz. serving.  I should be drinking two of these a day, but I'm starting out with one.  I'm hoping to lose the few pounds I gained over Easter, clean out my system, and get some good nutrients in there before the Big S.  I've also continued to do my 45-minute walk along Legacy Trail.  I'm hoping that helps to strengthen my heart for the procedure.  Of course, it's all baby steps a little late, but it feels good and that's what counts, right?

I went to the temple last Saturday and felt the "immediate goodness" of God.  For that hour, my anxieties were calmed.  My fears turned to trust.  He knows the Big Picture.  He knows my heart and my worries.  He knows about melanoma and how to fight it, and He teaches me daily how to be strong.  This Sunday, April 29, I'm going to fast through two meals.  I don't usually make an announcement that I'm fasting, but as Dean and Janessa talked about it in our weekly Family Council the other night, they decided that they wanted to join in.  Maybe others will, too.  I don't need to know and you don't have to tell me.  But if you do and you want to pray for me, specifically, these are my heart's desires (besides the ones I already listed at the beginning of the post):  calm and courage, slow-growing tumors, NED (no evidence of disease after the surgery), manageable pain, the shortest time in the hospital possible; and that Janessa will be comforted & taken care of with love.  No one knows her like I do, except God himself.  She needs me, and I need her.  I've got to live to see her raised and happy with her own little family.  This is my prayer, today and always.

(Picture:  Waiting for Janessa to be born--my water broke six & a half weeks before her due date, so we waited in the hospital for 10 days for her little lungs to develop before she could be born.  Waiting and worrying and wondering...again...)