Three Down

Third infusion is done. The worst part, again, was the lab work. After four pokes, still no luck finding a good vein for the IV. Poor Tammy, who has helped do my blood work numerous times, finally gave up and asked another nurse to just take blood for the doctor visit--the IV would have to be done at the Infusion Center. Had a good visit with Dr. Grossman's nurses, Carolyn & Jan. We went over all the annoying side effects of treatment and any significant changes (none to worry about) and even had some good laughs. Carolyn felt the groin tumor and said, "It seems to be less protruding!" Yes! That's what I wanted to hear! Blood tests came back good--good kidney and liver function and cancer-fighting cell count--but I am low in protein. Have to eat better, and on the days I don't feel like eating anything but crackers, I need to drink a good protein drink. I'll try it. Should help energy levels, too.

Lindsey & I had lunch on the top floor--I had soup, is anyone surprised? Then, back to the 2nd floor to the Infusion Center, where I had three more pokes before they called in the Big Guns--the PICC line crew & their invaluable ultrasound vein finder! Can we just start with them next time? They even gave me a shot of Lidocaine first in the IV spot, so I didn't feel a thing on that 8th poke! Finally, success! Geesh!

Got home about 5. Makes for a very long, tiring day, even though there isn't a lot of physical energy involved. I guess it's because the emotional stuff is so overpowering. I just want to chant, Kill! Kill! Kill! the whole time and get those immune cells jazzed....

The Good/Bad Swing

In the last week or so, I've had some pretty significant good/bad swings.  I'll have a good day, which generally means that I don't have terrible stomach pains or diarrhea (sorry we have to discuss such a subject, but it is what it is!) and I can eat pretty much what sounds/looks/or smells good.  Lately, it's been SOUP!!  I am constantly dreaming about warm, creamy, savory soup.  (Cutler's Chicken & Wild Rice is my very favorite!)  It could be that it's freezing--literally--outside and I just can't seem to stay warm.  Soup satisfies my taste buds, my inner body temps, and my little tummy.  But, just as I start to enjoy that good feeling, I'll wake up feeling like anything I eat--even my beloved soup--will just cause more distress...so I don't eat anything.  I just sleep.  I'm warm, I'm unaware of being hungry, and I don't roam too far from home.  Last week, I had a "bad" day on Thursday.  Didn't do a darned thing I had on my To Do list.  Napped morning and afternoon.  Went to bed early.  Ate Saltine crackers and drank water.  Blah.  But, Friday, I had already planned on birthday shopping with my cute Janessa, so I pysched myself into having a "good" day--and it worked.  I crossed things off the list, I cleaned the house a bit, and the two of us went to the mall after school and shopped.  I got to have an Orange Julius and some dinner.  Saturday, I took Janessa and four of her friends bowling at Fat Cats.  We ate pizza.  I surprised her with a fantastical "Sweet 16" cake and had a bite.  Dean and I took her to Spaghetti Factory and I had spinach alfredo.  It was a GOOD day.  Sunday, not so much.  Out came the crackers again.  Made J's birthday dinner--meat loaf and garlic mashed potatoes--and had to "watch" her eat.  Bad day.  Up and down.  This is the normal life with IPI, I guess.

Tomorrow is another infusion, the third.  I get to visit with Dr. G.  I wonder what he'll say about my groin tumor (is it shrinking or is that just my imagination and wild hope?).  I wonder what he'll say about these good/bad swings.  I can't wait to get some upbeat advice on how to handle it all because I know he'll have it to give me.  And maybe I'll get to have soup for lunch??  We'll see.

I was thinking of taking a picture from the Infusion Center tomorrow to show you what I see when I'm there.  If it's a good day, it will be on the blog.  If not, well, we'll try again next time.

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.