Every Little Thing

The other day could easily have qualified as a "bad" one. It seemed I couldn't catch a break, no matter what I tried. When J got in the car after school, I listened to her cute ramblings about HER day and waited to intrude on an obviously awesome school experience - which, by the way, doesn't always happen for her. When she was quiet, I said, "Well, I hate to tell you, but the Internet is down again." Her shoulders sagged. "Really?" I told her I had tried to fix it myself by unplugging & plugging in wires here, there, and everywhere, and it just wasn't responding. At least we had phone service this time, so I assumed the modem had finally died & I was going to have to fork out the few dollars needed for a new one - dollars earmarked for a REAL necessity. I almost stopped at the office supply store on the way home, but decided to wait a few more hours. "And that's not all," I continued. "I ordered you some jeans to replace the ones with holes in the knees & pockets and the delivery tracker said they were put in the mailbox a few days ago. I went out to check if there was a key in our box for the larger package box. There was...but I couldn't get the key in the lock! It seemed to be bent, like someone had forced it. I attached a little note to the key, asking if the mailman could check it out, but I was also going to have Dad try to open it somehow when he got home from work." She was excited about the new jeans, but shook her head as the story unraveled. Good grief! "AND..." I began, as she frowned, "I got the schedule for my iron infusions and they will be every other day for five cycles. So, three of the days are for 3:30 & we can do that, but one Wednesday is for 2:30 (the same time she gets out of school) and one Friday is for 3:00. I'll have to find someone to come pick you up on those days." Yep, it was officially a BAD day.

But... The story continued. We walked into the house, pretty dejected, and J immediately pulled out her iPod and tried to get service. She looked at me in shock. She had Internet service! I grabbed my iPad, ready to start reading email & Facebook for the first time all day...but it was not to be. Mine said, "Server not connected" or some such bad news. Okay, what to do? The thought - the comforting, peaceful thought - whispered, "Turn your iPad all the way off & wait a few minutes." J nodded her head, knowing this was a great suggestion. I pushed the off button, waited, pushed the button again for power...and HOORAY! Internet! Everything working perfectly! Thank you, God.

Now out to the mailbox. As we approached the box, we could see the larger one was slightly open & there was the package with J's new jeans! The key was still in our box, but the mailman had come & opened the bigger box for us. It was a blessing, but more than that, a miracle...because I don't pick up my mail every day (gasp!) and sometimes many, many days go by before I walk those few feet to the box. Luckily, miraculously, it had probably only been open a half hour at the most & was still there waiting for us. New jeans that fit awesome on my tall, skinny girl! Thank you, God!

We went back in the house and the phone rang. It was Rebecca with Dr. Grossmann's office. She had heard from the Infusion Center that the proper way to do my iron cycle was to do the five infusions once a week. She gave me my new schedule and it was every Monday (I'm here right now for the first one) at 3:30, except for one, which is at 3:00. On the 3:30 days, I can pick J up and drop her off at home and still make it on time for my appointment (was even a little early today). On the one at 3:00, she'll come with me & do homework or watch YouTube or something. It will work out perfectly! When I told my girl the news, she said, "Looks like all your bad news suddenly changed to GOOD!"  It is just more evidence that God watches over me & my family and has a hand in every little thing. He may not take away ALL the worry & sadness & pain & disease and real life experiences & consequences, but it's those little things that bring hope back to my life and teach me how very much He loves me. Thank you, Heavenly Father, for all You do!

Update on Scans

My every-3-month-scans were done about 10 days ago, along with a regular brain MRI. I'm sorry that I'm not more prompt about posting results, but since then, I feel like I've been running a marathon. J and I just went through the first week of school...and, well, I'll talk about that in a minute. 

I always get nervous when meeting with Dr. G to get the scan results, but that's not to say that I feel hopeless. Never. I know that whatever the news is, there will be a plan of action. I love that Lindsey comes with me as moral support & interpreter when my head is spinning from medical lingo overload. I love that baby Will steals the show and everyone wants to kiss & snuggle him & smile at his cute face. I also love that there is no small talk or beating around the bush when Dr. G or nurse Carolyn come through the door. Straight away, Carolyn said, "We don't have the results from the MRI yet, but your scans look wonderful, perfect. Now, let's take a look at them." We are immediately relieved of the worry & stress and looking at those weird skeleton/mass scans becomes intriguing. I love seeing the changes between the latest scans and the earlier ones, how little dark blobs have entirely disappeared or shrunk to pin pricks on the screen. I love that I have access to everything, even the medical jargon I need a dictionary to understand. I love taking printed pages out of the office to read and study and compare on my own. Dr. G comes in & basically goes over everything again, including my lab work, which still shows that I'm very low on iron and other good blood nutrients. But besides that, he has good news for us: 1) I have "graduated" to a 4-month scan schedule, which means I don't go back for scans until December!, 2) the experimental drug, PD-1, which I tried to get through the trial/study, has been approved by the FDA and would be available to me...if I needed it, which I gratefully do not at this point. Dr. G said it is a "miracle drug" with dramatic results for melanoma and that he couldn't be more pleased to see his hard work in research bear fruit. Once again, I have to say that of all the times to have melanoma cancer, this is the best time. He told Lindsey and I that in December, I will be at the 1-year mark since going through the IPI treatments successfully; if there is no significant recurrence at the 2-year mark, there is a high percentage I will make it to five years; and after that, there is a 93% chance (is that the right number, Lindsey? I just remember I was astonished & amazed) that I'll make it to TEN years!! Linds said, "We've never heard those numbers before!" It was truly good news! And, 3) to help with my blood counts, Dr. G recommended a cycle of blood transfusions (3 rounds) and a cycle of IV iron transfusions (again, 3 rounds). He wanted these to start right away, so I actually had my first blood transfusion yesterday morning. I feel a bit more energized today, so I'm optimistic. There are a couple more tiny issues to deal with, but Dr. G is "not worried", so I'm trying not to be either. Will be updating as I learn more.

Now, for the beginning of school: I'm so thankful that my scans were done so I could focus more on my girl. It's hard for all of us to believe she's a senior and that this is her last year of high school. I'm very proud of her for becoming more social and for standing up for herself in hard situations. She has also become more comfortable and confident with her true self. She's had to sacrifice quite a lot this past summer with our financial situation and I know my cancer is hard to live with, for all of us. I love her very much. My sweet grandchildren also started school - one 6th grader and two 2nd graders (plus two preschoolers!). Love them with all my heart!

Sabbath Joys

After my whining, selfish rant yesterday, I woke up this morning feeling ungrateful and small. I apologize. I am really quite blessed. I have a beautiful family - a good, hard-working husband, three wonderful children and two fantastic in-law children; and eight of the smartest, most beautiful grandchildren ever born. I also have loving, supportive parents and siblings who help me navigate this rocky road of life. My friends are the glue that holds me together. They compliment and encourage me, they share their successes and growing spurts with me, and they continually support me through thick & thin. I feel loved, even when I least deserve it.

Most of all, I have the assurance that I am a daughter of a King. I know I have a Heavenly Father who loves me and hears my prayers. I love my Savior. He has blessed me with grace and forgiveness and is beside me in my times of need. I am never alone. I have been blessed with miracles that come at exactly the right time and place. I have hope in every situation. It is just one of the many gifts from God that I treasure. I really must remember this every day. Feeling gratitude brings joy...and it doesn't hurt to be gentle with others AND ourselves...

Berry Smoothie...Not!

My 3-month exile is almost over - yesterday, J and I went to Huntsman to pick up the two bottles of "berry smoothie" contrast I'll have to drink for scans next Tuesday. Bleh! Just the thought of it makes me shudder. I think it's funny (sort of) that I'm always asked if I've had the contrast before. I guess my answer this time sounded a little annoyed - the radiology receptionist quickly said, "Oh, I'm sorry," which made me feel a little better. On the way back to the elevators, I saw Pam, one of Dr. G's receptionists, and found out she had just had a biopsy on a "spot" found in her latest mammogram. I wanted to cry. She has already battled colon cancer and won the fight. I pray this biopsy comes back benign, but if it doesn't, I pray she'll continue to fight on. Stupid cancer. Actually, that's not true - cancer thinks it is so smart, that it can bombard us sometimes and we'll just give up. Not so. It can't win that easily.

Summer has been, well...a test. My girl is actually anxious to get back to school in 9 days because at least then she'll have something to do and somewhere to be every day. We had some great plans in the beginning, but it all revolved around having a few extra dollars to spend, and sadly, it was not to be. I made some rash promises about events we could attend and places we could go - and now she looks at me with a "yeah, right" in her eyes. I'm still not sleeping well at night, so I go to bed late totally exhausted, and pray I can fall to sleep before the restlessness & voices in my head start. Then, when morning comes, I'm still in bed after 10 (or later) and it takes the rest of the day to  catch up...or not. Sometimes our big adventure for the day is a trip to the library or the post office or the gas station or the pharmacy. Big whoop. We did take the little trip to Manti for the Mormon Miracle Pageant and that was fun (even with the flat tire), but I would have also liked to go to Bear Lake this summer. We missed Raspberry Days! We did drive up to Park City to see the Olympic Park and watch a kids' aerial ski jump competition, but I would have also liked to go see "Wicked" while it was in town. We did go to a Salt Lake Bees baseball game (Dean's work has tickets, so we got in for free), but I would have also liked to go to St. George to see family. I shouldn't complain - we haven't gone hungry and we're still homeowners, but bills have taken all the fun out of life lately. Time for me to get a job, I guess. Everything depends on what my scans show on Tuesday. Can't really plan anything before then...

I have felt pretty good this summer, especially when I compare my life to some of my friends who are fighting cancer. They are right in the thick of it, going through treatments that make them nauseous and  achy and weak and bald. I pray mightily for them. They are doing their best, but they can't do it alone. They are so brave and hopeful and grateful. I am inspired by them. I worry about my fatigue and my gut and all the little things that could be happening inside. It's just what it is. 

I'll write again after my doctor's appointment Wednesday morning. That's where I'll get the results. Say a little prayer that all goes well. Thanks for all your love and support.

Soldiering On...

For a while, I've put off writing this post. I know there are friends and family out there who check regularly to see if anything is new or changed in my little corner of the world. And since this has been a blog devoted to my life with cancer, it seemed a shame to ruin my 3-month summer hiatus (and all of you who travel this road with me) with the dullness of days I've got going on right now. You'd think I'd enjoy it more, be more grateful, start each day with a smile, look for the silver lining in this down time. I AM grateful. Very grateful. The alternative is so much worse than my whining complaints. And I'm still hopeful. I have to be VERY hopeful. It's nearly one month until the next scans, and I pray every day that the doldrums I feel are not snaking their way into my cells and turning them into villainous tumors. I pray these feelings are just emotional and not physical. 'Cuz it's real...and it often crushes the good. Before I rant any further, I'm not looking for pity or donations. I don't need a casserole or a phone call or a drop-by visit. I DO need prayers. I DO need someone to read and then say, well, there is the reality of life. It's not all sunshine and rainbows. It's not all sugar cookies and ice cream. It's not all miracles and contentment. It's plain ol' life, and mine is no more perfect or saintly or courageous as yours. We're all soldiers together; it's just that sometimes the enemy is ourselves. I am on the ledge of depression. I've been over the ledge before, so I know it's not serious, as in need-to-take-meds serious. But I am teetering. It's been a hard half year for me. Some of you know details, some don't. I'd rather that you didn't. I've said and written this before, but I'll do it again: Heavenly Father knew I'd have to put all my energy into the way I've had to handle other challenges, so He took away the health battles for now (and hopefully, forever, right?). There are people I love with all my heart who have suffered and who are now suffering; they have needed me, some from afar, and not always in a physical way, but just in a pocket of my heart and soul. There are people I barely know with cancer who are dying a slow, painful death or who have been told they may have to have the Whipple surgery. There are children who have had more surgeries than fingers on their hands, or who have been burned beyond recognition, or who have been killed randomly and thoughtlessly. There are those I love dearly who have required intervention from some downhill spiral to save their lives. There are times when Friday's paycheck is gone, with mere pennies left over, by Friday night. There have been lost jobs and lost income. There have been promises of great summer adventures, only to be dashed by another bill or necessity, so that the only adventure for this week is a trip to the library and a few free books. My girl looks at me with hope in her eyes every morning...and I can only answer with a weak smile and an even weaker hope that maybe tomorrow--MAYBE--we can take a stroll through the grocery store and buy a pint of ice cream. Bless her heart, she accepts it without murmuring. She knows, though I wish she didn't. These days, I'm scrolling faster through Facebook without stopping or reading or watching or listening. Don't get me wrong--I love, LOVE, to see posts about awesome trips to the zoo and the beach and vacations and concerts and reunions and parks and parades. But, selfish me, it makes me sad. I want that, too, not for me but for her. One random day (they've all melted together in the heat), my girl announced she wanted to dye her hair. Purple...or maybe blue. I used to be the bystander who hurtfully judged these adolescent girls (and boys) with their crazy heads of colored hair and thought, what kind of mother would let her child do that? Now I know. She's probably a mother a lot like me, who has seen her beautiful daughter doubt her self worth and question whether her introverted personality makes her totally invisible to the rest of the world. She's probably a mother who would do anything to protect her beloved child from those who incorrectly assume because she is quiet and observant and hard to get to know, she is also a snob who thinks she's better than everyone else. So NOT true. She just wants someone to see her, to understand her, to talk to her and make her laugh, to like her because she's funny and smart and a great listener and a loyal friend (to those who break through her shell) and would someday like to be an anthropologist or a Secret Service agent or an author or a film maker and live in Alaska in a cabin with a huge St. Bernard and a few cats. So, I let her dye her hair, first purple, then blue. And I walk beside her in public and watch for people's reactions. Adults are the worst, especially older ladies with their (own) purple-tinted hair. Children are the best. Little girls see her and turn to their mothers and ask, Mom, can I dye my hair? Or who whisper, Mom, look at her pretty hair! Little boys stare. We laugh about it. And when someone (like the checker at the grocery store or the motorcyle guy in the parking lot or the mom at the park) goes out of their way to tell her they love her hair, I see how she glows from the inside out. She is not invisible. She is beautiful and always will be. And if blue hair makes her happy, it's okay, because someday she'll be happy with less drastic measures. Someone will see her heart and her mind and her beautiful soul, and she'll be happy. July is a hard month. It has been for 11 years now. We celebrate sweet birthdays, but we also relive deaths and regrets and grief. It's a time to be with family, but there are holes in our hearts where those we miss used to be. I have a hard time sleeping. I stay up late and read and write or watch PBS on TV, and just as I think I'm as exhausted as I need to be to sleep, I am back up again with an uncomfortable restlessness. It's not a pain or an ache, but something that makes my brain tell my body to move--stretch, twitch, rock, anything but fall asleep. Hours pass. My sighs wake up my hubby, so I leave our room. It's frustration at its finest. Some nights I even think about making an escape, anything to get away from the weird sensation of being "antsy." It's another reason (or symptom) of the depression, I know. It saps me of any other thoughts or feelings. It's torture. And so, I soldier on. One step at a time, one sleepless night at a time, one adventure to Wal-Mart for a loaf of bread at a time. I'm sure there will soon come a day when I'll reread this and think, good grief, it couldn't have been that bad. Especially when others are living through so much worse. It will pass. Hopefully sooner than later...

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...)

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 work...so 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...