The Christmas Miracle

I've been silent the past few months because I was in the midst of enjoying not having to think about my cancer. Four months of no scans or worries...it was fabulous. I admit that I spent more time than I should have just resting and not actively doing much of anything. I loved my quiet house after taking my girl to school. I loved cleaning up the kitchen from dinner the night before and hearing the dishwasher rumble away. I loved getting toasty under a blanket and rocking my puppy on my lap and reading book after book after book. I loved falling asleep on the couch, in my bed, or in the recliner in the middle of the day. I loved going without makeup and not caring. I loved eating donuts and cookies and Halloween candy. I felt good.

But, I was still worried. I wasn't taking care of myself. I had been given so many wonderful blessings of healing and health, and no matter what cancer had taken away from me, I still had so much to be grateful for. As Thanksgiving approached, I realized that my four months reprieve was quickly coming to an end. Celebrating all that God had given me opened my eyes - I have a beautiful, supportive family and wonderful, caring friends who pray for me every day. They deserved better. As that holiday weekend with my family in the "south" ended, I resolved to eat better, to go to bed earlier, to pray more sincerely for those facing struggles, and to try harder to live every day with more purpose. I have not been entirely successful, but going sugar-free & getting better sleep & praying with a grateful heart has  helped me feel better. I still worry, but much is beyond my control and can't be solved without time and patience.

Yesterday morning, Lindsey and baby brother and I headed up to Huntsman. I was feeling good, happy to have lost a few pounds and not finding new lumps or bumps. I was grateful to have Linds with me, even though she's been working hard getting ready for Christmas. Bless her heart...she helps me in sooo many ways, too many to count. I love her and am so thankful for her. Having baby brother there too was an added gift. He makes me smile. The CT scan was quick; even better, I was done with drinking the contrast. Not only does it make me shudder to drink it, but it hurts my tummy and makes me sick. It usually takes me a couple of days to get it out of my system, so I'm kind of out of commission for awhile after my appointments. The brain MRI took about a half hour and I listened to Christmas music to help me stay awake & not go bonkers listening to the MRI machine. It was lunchtime when I finally finished, so we had a yummy spinach/chicken/strawberry salad at the "Beast" (Bistro). We had told all the techs that I had a doctor appointment at 1:00, so we were praying hard that the scan results would be ready by the time we got to Dr. Grossmann's office. (I usually have the scans one day & the doc appt the next day.) With a gurgling stomach, I was weighed (lost 9 lbs in about 3 weeks!) and we were taken to an exam room. We expected to wait for awhile, but Dr. G came in after a few minutes with a new intern, Gerry. He sat down, asked how I was feeling, and in the next breath, he said, "Your scans look great. I don't see any tumors. Merry Christmas!" As Linds and I gasped and shed a few tears, he showed me the scans on the computer and pointed out the differences between past scans & tumors and the new scans. The tumor in my back showed a very small shadow, which he felt was probably scarring. The tumor in my groin was completely gone. Nothing in the liver or anywhere else. It was miraculous! I think I was in shock.

Leaving Dr. G's office, his assistant, Carolyn, came down the hall with a huge grin on her face. She gave me a big bear hug and said she was so happy for my good news. The ladies at the reception desk reacted just as happily. Pam said we needed to go out & celebrate! Nancy, the nurse in the lab who was de-accessing my port, congratulated me and told me I was the "poster child" of survival. I mentioned something about how happy I was for myself, but how sad I was for those who would not get good news for Christmas. Then she told me that I should never feel undeserving, that other cancer patients, especially those with melanoma, needed to know that there was someone who was responding to treatments and was moving forward to long-term survival. She said it was important for the doctors to be able to tell their patients about me, to give them hope and show how the new research & meds are saving lives. I had never thought of it in that way. It made me feel better about my own purpose.

Everything now is hopeful and long-term. Because I am a late (and slow) responder to the Ipiluminab, it has continued to work long past the chemo treatments. Dr. G said we "cheated" a bit by radiating my back & groin and kick-starting the Ipi, but we all laughed when he said, "I'll cheat against melanoma any time." If nothing happens in the next six months, statistics say that I should have a long-term survival of more than 10 years! What a long way we have come since the day Dr. Bradley said, "You have melanoma and there's really no cure." As Lindsey said, "Take that, Stage IV!"

My next scan appointment is in June! Summer! My girl's graduation! Six months! I prayed long & hard from Day 1 to see my girl graduated and never ever thought I'd get to this point...and here it is, our Christmas miracle. This is my gift and it is all I have prayed & hoped for. Thank you, Jesus. I know who gave me this gift...and I love Him with all my heart and soul.

May God bless us this Christmas. I know He has blessed me.

Full in Body & Soul

I have finished the blood and iron IV infusions. I wish I could say the end results were miraculous, but the truth is that after the Monday treatments, the energy and overall good feelings would only last until about Thursday. After that, I'd feel the need for more and would start counting the days until the next infusion. Now they're over and I can only hope that things are working well on the inside. I'm trying to eat a little better (though bags of Halloween candy somehow find their way into my shopping cart) and last weekend, Chelsea brought me some kefir grains to grow my own kefir. The list of good benefits, especially for someone like me, is amazing; but the hard thing is getting used to the kefir. Chels suggested I start out using about 1/8 of a cup a day by mixing it into yogurt or smoothies or soups, etc. I would really like to see it improve my stomach aches and give me better digestion, but it's taking time and patience. I'd love to be full of good things - nutritious food, healthy vitamins, peace & calm, joy & hope. Some days are better than others.

During the last two treatments, I had another small worry. Apparently my port has become "wobbly" or "tipped" (according to nurses). For almost two years now, the port has been my little miracle - easily accessed for both infusions and blood draws without being poked in the arm five or six times. When it was being accessed for the fourth of the five infusions, the nurse had to try twice before the needle went in smoothly. She told me to tell the nurses the next time it was accessed that it tended to flip to one side. So the next Monday, I forgot to say anything until the nurse couldn't access the port the first time. She pushed and pressed, trying to stabilize it on her own, but she still missed the target the second time. She is one of my favorites, and she kept apologizing over & over. Finally, she called another nurse to stabilize the port while she put the needle in. The third time was the charm & it worked perfectly, but I was sore and bruised around the port for several days. I asked what caused ports to become "wobbly" and she said that after a certain amount of time, the tacking around the port might come loose. But she also said that sometimes ports will flip all the way around, but they can still be accessed okay. I also called the doctor's office to see if we needed to do anything right now, and Rebecca said we'll wait until after my scans in December. Just hope it will work okay then.

I loved having Janessa go with me for the infusions a couple of times. Even if we don't say a word, it's a comfort to have her there. She didn't go for the fourth treatment and I wish she would have because I had a great visitor. Dov Siporin is a chemo veteran who has gone through more treatments than anyone I know for Stage 4 colon cancer. In spite of this, he roams the Infusion Center & the rest of Huntsman, joking and bringing joy to other patients. He is also very sensitive to hardship and suffering, and we talked about how something as wicked as cancer can bring people together - people from all walks of life and backgrounds who share the fight against our individual Goliaths. He is wonderful. He was handing out mini candy bars and cheering us all in our battles, even as he pushed his chemo IV stand around the room. I wish my girl could have met him. He is such an inspiration to so many warriors. 

Lately, I've been thinking & praying for a couple of beautiful young mothers who are also fighting melanoma. I've mentioned Alisa before in my blogs. She was diagnosed several years ago and after treatment, went through a period of time without any new spots before the cancer hit again - hard. She's tried many of the same chemo treatments & trial meds that I have, with varied successes & failures. Her last big treatment was a powerful chemo that took her hair (for the first time) and seemed to be successful in shrinking her biggest tumor. But at her next CT scans, she found out that the tumor had started growing again. It was "back to the drawing board." I was so sad for her. This ride is a roller coaster that never lets you off. The second woman is Kathy, who was treated for melanoma on her back many years ago. She & her husband are the parents of five little children and Kathy was pregnant with her sixth. She started feeling pain and knew something was wrong, so she went to the doctor & found out the melanoma had returned. When her system started shutting down, the doctors said she would have to start treatment to save her life, which also meant she had to deliver her premature baby, who only lived a few days. Her family was prepared to tell her goodbye, but she rallied a bit & was able to go home with hospice care. That was about two or three weeks ago. Last week, she started to go downhill again, unable to keep down her chemo medication or the anti-nausea meds. Then she started to hemorrhage and was rushed to the ER. Her husband said that they decided not to have the children come back to the hospital. They wanted them to remember the better days when Kathy was able to read to them and snuggle with them at home. They had also decided to let Kathy pass without further treatments. I have checked her blog every day to keep updated & so far, she is hanging on, even eating French toast & pizza that she has not been able to eat for about seven years. I am amazed at both Alisa's and Kathy's hope and gratitude and faith in God. I am inspired by their lives, but I pray for their families and that their last hours & minutes will be peaceful and spiritual.

Last weekend, all my children & grandchildren were available for family photos. We haven't had an all-together picture in two years. I'm excited to see how they turned out. Not to be biased or anything, but I have a gorgeous family! I'm very blessed.

 

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...

On Hiatus

For any who have wondered how my 3-month hiatus is going (until next scans in May), I am doing well. I have my ups & downs, of course. I'm eating better - and gaining weight, which is not really a good thing, since I tend to eat the worst things. I've got a goal to give up sugary treats - candy, cookies, cake - as soon as I eat the mandatory Reese's peanut butter Easter eggs and a few pink Peeps! I can tell that it affects me in ways that I don't need or want & I know, deep down, that cancer loves white refined sugar. So why would I purposely put that junk in my body? Am I crazy? Addicted is more like it. That ends next week. It will be hard, but I've done hard things & I know I can do it again. I want to feel better, body & mind, and I want to feel motivated to exercise to make what muscles I do have stronger. I want to stop cancer without resorting to surgery or radiation or chemo. It seems so simple, to starve those nasty cancer cells and make them disappear on their own. 

I also believe that God gave me these three months to worry about something other than myself. Dean had a terrible case of bronchitis that went on & on until he finally got on meds, Janessa has gone through some health issues that needed my attention, and other family members have needed time, love, and support that I've thankfully felt well enough to give. Amazing how that works, isn't it? And it's great to know that He is so aware of each of us individually that His blessings are exactly what is needed at exactly the right time. He is my source of strength, always.

One of the blessings I recently received was being able to go to the temple with my sweet niece, Audrey. She's preparing to begin a full-time mission in Mexico in a couple of months. She is currently a student at BYU & chose to go to our beautiful Bountiful temple. It was a special, sacred experience & I was grateful to share it with her, my mom, two of my sisters, & my Aaron and Lindsey. Again, it was a blessing in this time of waiting & being well enough to participate in such life-changing events.

It will soon be Easter. It will be a low-key celebration this year at our house, but we will certainly be counting our numberless blessings. Because Christ loves me, I try harder to be better every day. There will be more updates as time goes by, but for now, I'm enjoying the service I can give to others. It may be small, but my heart is full of gratitude to be at a point of giving instead of taking...

(Pictures: the beautiful Bountiful Temple and an Easter picture taken in about 1967)

Another Year

Last week, March 7, marked the 3-yr anniversary of my melanoma diagnosis. The past three years have been a roller-coaster ride: surgeries, radiation, chemo, pain, sleepless nights, tumors in weird places, bills in the multi-thousands of dollars, countless doctor visits, driving up & down the hill to Huntsman or the U of U, prayers, scans & MRIs, miracles, hope, good news, new baby grandsons (3 of them!), Mom-scares & hospitalizations & recoveries, my girl dating & driving, a little black puppy who loves to snuggle and sleep under my blankets, and many, MANY other hiccups and blessings. To say I am grateful would be like saying I'm human... Well, duh! I am beyond grateful. I am here, I am alive, I am functioning, I am a result of many miraculous mercies that seemed unreachable - but "nothing is impossible with God." I pray to be here in three - or twelve or thirty - years, counting blessings and enjoying every second with my sweet family.

Last week, I saw Dr. Adler to follow-up on my pancreatic enzyme meds. Yes, I'm doing much better, but not as perfectly as I had hoped. Still have stomach aches, which I hate. They sap my strength. He gave me a few tips - cut out obvious white sugar sources, like cookies, candy, & cakes, and watch out for onions & peppers etc. There goes most of my diet! He also admitted that another side effect of the Whipple surgery (haven't I had to endure them all?) is that because part of my pancreas has been removed, the remaining part will eventually atrophy. Great. How long is "eventually"? He also said that, unfortunately, in "ten or fifteen years", I might develop diabetes, which the pancreas also helps to control. I should have shuddered at the thought of diabetes, but my ears and my heart were somersaulting at the hope of 10-15 years down the road! To see my girl married with babies, to see my grandchildren growing up & going on missions & graduating from college & marrying in the temple...these are dreams I cherish and want to experience. To be alive, even with diabetes, would be an awesome answer to prayers. 

All in all, I am grateful for what I've learned over the past 3 years. I wish I didn't know what I know, but if I had to have this trial in my life, I'm thankful for knowledgable doctors and ongoing studies & trials & treatments that have brought me this far. This is a time of ground-breaking hope and scientific revelation which are blessing thousands of people everywhere. I am just one of many, but so happy to be one.

Lovely A-Plus

I had my regular 3-month check up scans and brain MRI done late in the afternoon on Tuesday. Even though the procedures were quick, my stomach was in turmoil after drinking the contrast. Ugh. I was even in a little bit of pain lying there on those tables, so I was ultra-happy when things were finished. For the first time, I had to re-do one of the MRI scans because the tech could see "movement". Weird, especially since I know I've drifted off before & have jerked myself awake again without having a noticeable "movement".

Wednesday morning, Linds & baby Will came with me to see Dr. Grossmann for the results. Will was an angel-baby and stole the show. Everyone loved him. He is so precious. Dr. G came in grinning and in a GREAT mood, which is always a good sign. The first thing he said to me was that my scans were "lovely" and everything looked wonderful. Really? Truly? I actually clapped for joy. I love how he goes through each image, explaining what has been there for a while & remains the same or what has shrunk because of treatment (groin & back tumors) or what has disappeared entirely (liver). He expressed the wish that he could assign one radiology technician to read the same patient's scans so the new ones wouldn't "freak out" if they saw something unfamiliar. I'd have to agree. Sometimes I've read their reports and wondered why there was such a "doomsday" feeling compared to Dr. G's optimism. He told us that there are some people who, years later, are still receiving the benefits of IPI. How cool is that? I'm going to be here a long, long time! He also said the MRI was "A-Plus" and that this was a "best news day". So awesome. Thank you, God.

After looking at the scans, Dr. G said he wanted to see & measure the back and groin tumors. I showed him the back one first, and suddenly, he became very excited. He told Linds to come over and look at what he was seeing. He also told me to look in the mirror when I got home and see what he was so pleased about. Where the radiation had burned my skin, there were now little "white spots" that were de-pigmentization from the treatment. (I know I'm not going to get across the scientific terms & meanings - even I don't fully understand it - but hopefully this will tell the gist of it. I really need to look up this process and research it.) The spots were evidence that treatment effects were continuing and that my good, cancer-fighting cells were "fighting" the dead, burned cells, recognizing that they were not normal. He was ecstatic that I'm still responding. He also said that this could happen in my hair or on my scalp and that some people call them "leopard spots". So interesting. I'm grateful for his explanation and his enthusiasm that it's a good thing because I think if I had discovered it first, I would have freaked. What in the world is THAT? 

The only bad news of the day was that my blood counts are still terribly low. Dr. G said that my body has become so used to these low levels, it compensates & gives me enough energy to handle my every day life. He looked at Linds and said, "If you or I had these low numbers and tried to walk 10 steps, we'd be 'whupped'." He finally ordered that I get 2 units of blood, and Linds & I couldn't have been happier. We've been waiting for this and hope/pray that it makes a difference & tells my blood marrow to ramp up production of my own good blood cells. I'm also praying that it gives me energy and maybe some "roses" in my cheeks. We'll see...

So, I went home yesterday with my port accessed (that was kind of strange, too) and came in early this morning to get my two units of blood. Linds texted me and asked, "Do you feel like a vampire yet?" YES!

I love Dr. G's optimism and hope. There is no beating around the bush - he tells it like it is and treats me like a long-term survivor. Yesterday, he asked how my singing was going and I had to tell him that I had had to give it up. It made him sad to hear that, and he said he would try everything he could to get me back to my "cool hobby." I love that he thinks of that when he sees me and he remembers it. I'm very grateful for his compassion and expertise. I always leave his office feeling more powerful and armed with knowledge. 

My sweet oldest grandson celebrated his birthday last week. He's growing up. It's wonderful to see.

  

Love Pics

(Daddy Aaron holding the hand of his perfect little son...a treasured moment...)

 I know I haven't blogged lately; maybe because there is more to "show" than there is to "tell". News on the medical side is pretty boring right now--for a few more days anyway--which is just how we like it. Scans are happening in four more days & it's hard to believe 3 months have gone by since the last ones. But that's not to say that life hasn't been a-movin' and a-shakin'! Just enough to keep me busy and on my toes, which is a great boost to the energy level, as well as the quality of sleep when I do finally crash. The Creon meds (my pancreatic enzymes) are working tons better since I was taught how to take them properly, so that has been a blessing. Food isn't very fun when it becomes a constant worry...

Now for the "showing": This has been a dreary, cold winter for me. The house is never warm enough & is only tolerable when I wear a sweater or jacket inside (I feel like Mr. Rogers--now I understand changing into a zip-up sweater right after walking through the door! I do it, too!) So, the following "love pics" have warmed my heart and kept me from tipping over the edge of sadness due to lack of sunshine & fresh air. It's been tough! 

January is brighter because of my tall, thin, teenaged girl who celebrated her 17th birthday without too much hoopla (our car was in the shop all day, so we had to be content to watch movies under our fleece blankets). She makes me smile daily, cry once in a while, and laugh when I really need it. What a gift she is! The picture of her as a sweet chubby baby with my darling dad was a warm way to celebrate his 75th birthday at the end of January. We miss him hourly...  And our chub-a-bubba, Jax, is now 7-months old, as of January 28. Papa Roy must giggle every time he sees these precious babies!

February has already enlarged my heart & filled it with love for my wonderful family. On February 5, our little Jane celebrated her 4th birthday with balloons and berry-filled cake and lots of girly-gifts...AWESOME! But the best gift of all (though she may argue that fact as she gets older!) was the birth of her brand-new baby brother later that afternoon! Will Calvin was born about 5:30 PM on February 5. He weighed 7 lbs 8 oz, was almost 20 in long, and has the cutest, roundest face & little boy "haircut"! We are all completely in love with him. In the words of his proud daddy, he is "perfect"! We've kissed his velvety-cheeks, snuggled his tiny body, and watched, mesmerized by his every breath & movement. He has captured our hearts.

Finally, no pics, but February 9 marked our 35th anniversary. 35 years? How can that be? Some days, it feels like forever--other days, it was a blink of an hour. Crazy life.

Enjoy the "showings". I feel warmer already.

Light & Dark

I'm sitting in the sun, moving the chair as the light scoots across the sky, and it feels sooo good, but not quite enough. I almost want it to scald me, like when I turn the knob to the hot water in the shower until it bites - yes, I really do that. It doesn't help my dry, itchy skin, but it soothes me for a few seconds , and so I continue to sit here, wishing there was more warmth and more light coming through the panes of glass. I hesitate writing this post because I'm depressed - mostly from the lack of light & warmth in my world of winter inversion - but also because I'm carrying some heavy burdens right now. Emails & texts have gone out (phone service is still sketchy), but everyone has their own weight to carry and I don't want to make this a sob-fest. So, I'll move my chair one more time before the sun goes behind the house across the street & I"ll resist crawling under my fleece blanket on the couch until I've finished this post. No more complaints for now. No more to say. Today's sob story ended.

I went to see Dr. Adler at the University last Thursday. My memories of him from two years ago we're not that complimentary; I thought he was blunt, hurried, and a little too high-and-mighty. This time, he came into the room cheerful, personable, concerned for my well-being, and ready to shake my hand. What a pleasant switch! We talked about my Whipple surgery and the symptoms that brought me to his office this time. We talked about the effect of having one-third of my pancreas surgically removed & how that relates to my symptoms now. We talked about my Creon prescription and how it should help my body absorb nutrients, digest food properly, and get rid of waste normally, none of which it was doing effectively. He asked if I had been told how to take the pills and I admitted that the only direction I  had received was what was written on the prescription bottle: Take 2-3 capsules with every meal and snack. He said, "When are you taking them?" I told him I usually take 2 after every meal. He shook his head. "That's the worst time to take them." He further explained that if I'm taking the capsules AFTER a meal, I'm already playing "catch-up", and because of my shortened bowel, the food has already moved quickly through the tract & is pretty much "on its way out" before the Creon enzymes can take effect. If I take them BEFORE the meal, the enzymes are ahead of the food & have no positive action in digestion or absorption. The ideal method for taking the enzyme is to have 3 capsules at my plate: take one before I start to eat, take one midway through the meal, and take the final capsule right as I finish. "Even waiting 10 minutes after a meal is too long," he said, which is what was happening 90% of the time. No wonder I wasn't getting any relief after taking the capsules! Dr. Adler said he was amazed at how often people were NOT told the proper way to use the Creon. Someone is falling down on the job somewhere! He said he expected I would feel more normal within a matter of days. Wow! Already there is a dramatic difference. I'm very encouraged. He also showed me the latest CT scan of my pancreas and just what the "cut end" looks like. He said that if this proper way of taking the Creon doesn't work, the next step would be to investigate if that "end" is properly sealed. If it isn't, it could come down to being surgically repaired. But, Dr. Adler (and others, including myself) has only good things to say about my surgeon, Dr. Scaife, so that is a very remote possibility. Thank goodness. I certainly don't want another pancreas surgery in my lifetime. I go back to see Dr. Adler on March 4 to see how things are working out.

That was definitely a "good news" day & I needed it desperately. It was a sweet answer to prayers and I was very grateful. It was a ray of sunshine and a burst of warmth that offered some relief to the gray, hazy skies that even the sun can't penetrate. Tiny drops of mercy (and this darling 6-month old!) are keeping me going...

Something Right

When the phone rang the other day and Caller ID said, "University of Utah," I answered it and held my breath. It was Dr. Shami, at last! (Isn't it great that some of these doctors still make their own follow-up calls? I love it.)  He apologized for taking so long in getting back to me with the results of the bone marrow biopsy & explained that they had tried to run EVERY test to rule out what could be causing the low blood counts. Ultimately, they found NO melanoma or leukemia or Myelodysplastia in my blood marrow! The chromosome testing also came back normal. Normal! It gave me goosebumps! Dr. Shami did say that there was not a lot of tissue in the biopsy to test for someone my age, but he attributes that to my recent chemo & radiation. He also admitted that he has no explanation for the low blood counts, other than that those same treatments have depleted the counts substantially, and that, hopefully, they can be built up again. He said to continue my follow-up visits with Dr. Grossmann, but that there wasn't anything going on with me where his services would be required. I said this was good news, and he said, "Yes, it is, it's very good news." I am so relieved.

Still waiting to hear about my stomach bloat, but the worry-voice in my head isn't sounding a blaring alarm right now, so I can be patient. For now...

Here are some pics from the holidays. They make me smile! Avery decorating a gingerbread man on Grammy day, Jane & Ally in front of one of the decorated shop windows at the Grand America, and lunch at Spagetti Factory with Knox & Silly Olive!

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Happy 2014

First day of the new year! I didn't roll out of bed until almost 10 AM, even though we were fast asleep by 1 AM this morning. Just ask Janessa - it was another boring New Year's Eve with a movie, Papa Murphy's pizza, watching the ball drop in NY Times Square, and a goblet of "bubbly" (sparkling cider) at midnight. She would have much preferred hanging out with someone - ANY one other than Mom & Dad - but such is life. Maybe next year?

I am grateful to see 2014. There was a time (March 2011) when I didn't think there was anything beyond a few months at most. But today, sitting here in my jammies, with a tummy full of omelet, watching the Rose Parade, I believe anything is possible: the promises of 2014 - with a new baby grandson in February and all the rest - to the promises of 2015 - with Janessa's graduation from high school - to everything that follows. I feel okay. My nagging questions come from not knowing, whether it's the endless waiting for test results or wondering how we can afford our medical bills & still plan some fun family times - that's what weighs me down. 

I'm still (3 weeks later) waiting for the results from the bone marrow biopsy. I've called Dr. Shami's office twice & still no word. I called Dr. G's office yesterday because I had questions about what I feel is a bloated stomach (weird symptoms) & they're going to help me talk to someone more knowledgable about the pancreatic enzymes I take after every meal, which don't seem to be working as well as they used to. More waiting... The lack of information does seem to lean toward a "non-serious" prognosis, but I can't quite believe that yet. I make excuses for the holiday bustle keeping normal business from moving forward, but not sure that's correct. Everyone wants to know if I've heard anything yet - believe me, you'll know when I know. I'm also still waiting (7 weeks later!) for my new contacts, but don't get me started on that fiasco. It just makes my blood boil!

I loved my family time this holiday season. Spent "Grammy-time" with all 7 grands & it was heaven. Wish we could have done more together (sometimes my energy and the cold temps & bad air quality outside keep me inside my "cave" like an old sleepy bear), but I treasured the precious moments we did have. I have a fantastic family. I love them dearly.

I pray for a wonderful year ahead. I pray for more hope, more miracles, more good news, more strength, more laughter, more love, more patience, more hugs, more spiritual experiences, more happy memories, more comfort, more courage, more answers, more dreams coming true, and more joy in every day life.