Thursday, May 22, 2014

Springing Forward

After my three month "vacation" from Huntsman Cancer Institute, it was time for the scheduled scans:  CT of neck, chest, and abdomen, and brain MRI.  It was pretty much business as usual, except that the University Health Care network just happened to be launching a new computer system this week. What should have been a simple (brief) CT scan and the usual 45-minute brain scan turned into a four-hour marathon that was 98% computer-related. Good grief! My sympathy was absolutely with the clinic receptionists, the nurses, the lab technicians--every step of every procedure had to be entered into the new system, which of course was confusing, slow, and unfamiliar. The only bright side was that every person who crossed my path was apologetic, kind, and ready to do anything to make my wait less stressful. It will be a good system when it's up & going...if we can all endure the mess it is now.  I was worn out from running from one end of Huntsman to the other (the lab where I get my blood work done & my port accessed/de-accessed is down a long hall on the 2nd floor on the west side and Radiology is on the 3rd floor of the east side down another hall!) and from the anxiety & worry.  I came home and slept, which is how I deal with a lot of things lately.

The next morning, Linds and darling baby, Will, came with me to get the test results from Dr. Grossmann.  Again, the new computer system reared its ugly head for a moment: my appointment had  accidentally been deleted and rescheduled for next week, yet no one had called to tell me! I thought the worst, sure that the scans were so bad that the doctor needed more time to study the results and options and break the bad news. Linds and I are well-known among Dr. G's receptionists, and poor Patti (who had canceled and rescheduled the appointments) couldn't say "I'm so sorry!" enough. When we said we didn't want to come back next week, she pulled some strings. "I've got good news & bad news," she said. "The good news is I found a spot for you today.  The bad news is that it's not for two more hours. Can you wait? I'll give you some cafeteria cards for a free lunch!" Of course we agreed.

Sweet baby Will made the waiting time bearable.  Everyone wanted to goo & smile at him and tickle his little tummy. He was so sweet. Such a good baby! All my vitals were good; I've even gained four pounds! Yikes! The new appointment time worked out to be better than the original one--not so many other patients around, which gave Carolyn and Dr. G more time with us. A tender mercy. Carolyn came into the exam room, beaming and cheery. "Your scans look great!" That was all I needed to hear to relax. She and I looked at the scans together and she showed me my drastically-shrinking tumors in my back and groin (I personally can't even feel them any more!) and how the little "spots" we've been watching for a while have disappeared! God is good, isn't he? My blood tests were better, which is probably from my better digestion & weight gain. Dr. G was a little concerned about possible anemia and the need for me to have another blood transfusion, but the low score was most likely a glitch in the computer system because I haven't heard anything further from him about it. I asked about a recommendation for a new ENT (Ear/Nose/Throat) doctor (wonderful Dr. Bradley isn't on my insurance plan any more...sniff, sniff) and I've already got a consult appointment with a Dr. Buckman next week. Dr. G said he's a surgeon, and since what I really need is to get my right ear cleaned out again (since the radical neck dissection, there is no moisture whatsoever in that ear), Dr. Buckman might be "over-kill". "Gunk" accumulates & clogs up my ear, and I can't hear! We'll see what they say next week. The neck scan actually shows a blockage somewhere by my ear...could explain a lot...maybe.

Dr. Grossmann was pleased to see that my "white patches" (I know there's a scientific name for it, but do you think I can remember it?) are still signaling the "death" of cancer cells in my back AND in my neck/face. I don't notice the facial patches, but he commented on it the minute he saw me. I told him that in the past three months, I've also developed a nice white "stripe" in my hair at the back that won't hold hair dye--my new zebra stripe! I guess to me those things seemed to be more age-related. Who knew?

After all was looked at and discussed, Dr. Grossmann said that I can go another three months before the next scans. He said that his main concern at this time is that my brain scans stay clear and that I'll need to stay on the 3-month schedule for a few years, since any melanoma brain mets that grow can be treated through surgery & radiation when they're found early. Though this is a scary thought, I also feel a lot of hope & comfort when he talks in terms of years. When I first started this journey three years ago, there was a "doomsday" feeling when we discussed the length & quality of life, living with melanoma. Dr. G is amazed at the wonderful new drugs and studies and trials to combat this cancer, and even said that melanoma's development of successful treatments is the fastest growing science among all the cancers. I'm seeing it in my own life with the success of the IPI drug; now, PD1 has been approved, and Dr. G says its success is even more astounding than IPI. God is really good, isn't he?

I'm looking forward to a summer without doctor appointments. I still have good & bad days, mostly with my gut, which is my "normal". One day recently, I could barely drive to pick up J at school because of the pain. Sometimes my well-laid plans to run errands or do something fun with family have to be put aside to climb into bed for a few hours while the pain subsides. It's a "normal" that I'd rather not have to deal with, but there are worse things out there...and I feel extremely blessed. And getting good news just automatically makes me feel loads better!  (So do these adorable people in their Easter best! And, yes, I'm so sad not to have an Easter pic of my sweet J...)

Monday, May 5, 2014

Lessons from the Road

I have a new job. Well, it's an old job with a new "client". I'm already the main taxi driver to and from the high school twice a day; now, I transport the hubby to and from work, too. With over 300,000 miles, his old truck finally fell apart piece by piece until it couldn't pass inspection & emissions at the end of April without a boatload of money. Its fate is unknown. For now, it's parked in the driveway until we either win the lottery or sell it to the junkman for parts. We just spent over a hundred dollars on my car for a new battery and headlight bulb - praying now that it sees us through all these extra miles on the road. On a typical weekday, I give my girl her first "wake-up call" at early AM and the hubs and I head off to RMF, me in my jammies. I get back home 15 minutes later and give the second warning to Miss J so we can be back on the road to school. Afternoon brings the process back again full circle. I should count my blessings that the commute times are staggered enough to make it far.

Today, driving back from the school, I started thinking about different lessons I've learned on the road from the time I was a little girl to now. I learned kindness & compassion from my father, who seldom passed a car in trouble without pulling over to help, often in the worst kinds of weather. The rest of us would huddle in our station wagon, worrying for Dad's safety, but proud that he was such a help to those in need. I learned how frightening an accident can be, even one that's basically a "fender-bender", when my mom was hit broad-side by a car running a stop sign. We were on our way home from Burger King with dinner, and I never eat a Whopper without remembering that day long ago. I learned that there are some things you wish you had never seen from the driver's seat, like a motorcyclist (not wearing a helmet) losing control of his bike at 50mph or the mother who threw her babies & then herself from the upper floor of a downtown hotel. These images seem to be permanently imprinted on my brain, and I am always sad & full of sympathy for these unfortunate victims and their families. I learned that road trips, whether for a few hours or several days, are always better once you're in the car - I'm a stressed, grumpy, frazzled pre- and post-vacation person. Just get me in the car & I could care less if something was left behind or undone! I immediately start to relax and look for landmarks that bring me closer to my destination. I learned that cars run better when they're clean (thanks, Dad) and that regular oil changes bring peace of mind (thanks, hubby).

One cherished lesson came about 18 years ago. Once again it involved my taxi driver status. I was dropping my 9th grade daughter off at school after a particularly trying morning. There had been tears and grumbling, and it was a miracle she was now curbside, ready to go to class. I watched her gather her backpack and open the car door. I probably sighed a little too loudly as she headed for the junior high. I was newly-pregnant after almost 15 years and my emotions were shaky. As I watched my beautiful, strong-willed, stubborn but insecure daughter walk away, the thought came to my mind, "And you really want another one?" Just as quickly, a voice inside said, "Yes, because I love that one so very much." I cried all the way home.

The past three years have brought other lessons from the road - climbing the hill to the hospital or going from clinic to doctor's office, sometimes for simple (is there such a thing with cancer?) appointments or more complicated treatments or even that haunting trip to the ER when I was in such horrible pain & ended up in the ICU. When I'm with others, these trips can include laughter, tears, hope, faith in the doctors, trust in God, dialogue that helps unravel "medical-speak" & bring understanding. When I'm alone, it's a time to pray, listen to soothing music, remain optimistic & rehash options, or just simply drive in silence. Each time is a lesson, each time is an opportunity to count my blessings. And each time I get behind the wheel to take someone I love to work or school, it's another chance to be together, even if no words are spoken until, "Goodbye, have a nice day, I love you." More lessons to be learned...