Friday, November 30, 2012


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.

Wednesday, November 28, 2012

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...

Monday, November 26, 2012

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.

Thursday, November 8, 2012

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)