New Year's Musings

It's officially 2015, New Year's Day. The old year is gone, along with challenging days, sleepless nights, wonderful miracles & joys, lovely timeless memories of family & friends, a little jumble of every emotion and thought. I celebrate those awesome, exciting times, but I also reflect on the difficult days. In spite of all the precious blessings I've been given, I feel melancholy creeping in today. It makes me feel terribly ungrateful and selfish. But maybe that's part of beginning a new year - experiencing regret & sadness and resolving to make life better in the coming days and months.

The happy, heart-warming season of Christmas is over. The family has gone home, the decorations are put back in their boxes, the calendar pages are turned, vacations are ending, and routine (often boring & stressful) is back. I see what has been neglected through December: the house needs a good scrubbing top to bottom, drawers & closets need to be rehauled, the paper trail is screaming for attention, and the desire to do & be better is urgent. I want to do it all, but I recognize the truth that nothing happens overnight. It makes me sad.

I'm also in mourning today. One of my sweet blogger friends, Kathy Taylor, another Stage 4 melanoma warrior, passed away yesterday at home. Her husband briefly and bravely posted about her death within hours of her passing and said that New Year's Eve would forever be a celebration of her life. His first concern, as he finished the post, was to comfort their sweet little children. I cried to read this news. Kathy held onto life with much hope and faith, and it blessed all of us with the same hope. I am grateful that she has returned Home to our Heavenly Father and is now without the severe pain of cancer, but I mourn for her family and friends.

We also went to our traditional New Year's Day movie today and saw the third installment of "Night at the Museum". I liked the movie a lot, but I was surprised at how emotional I became seeing the late  Robin Williams on the big screen. There were several very wonderful scenes between "Teddy Roosevelt" (Robin Williams) and "Larry" (Ben Stiller) that actually made me cry. I miss Robin and his wonderful humor and immense talent. He was a troubled soul, but he devoted his life to lifting others. It makes me cry now to think of him.

On we go. In the coming weeks, we'll be celebrating our baby girl's 18th birthday (what??), and working on applications for financial help with her college plans in the fall (again...WHAT??). I'll also be searching for a job that will fit my "new life" - at least for the next 6 months of no scans or treatments. That scares me, honestly. I just want to write books. I want to be my girl's taxi service because that's where our best conversations happen. I dread dealing with drama, (more) stress, time restraints, exhaustion, etc. But the bills keep coming & lottery tickets are too expensive - ha! I pray that the Lord will guide me in the best direction. He knows where I should be & what I should be doing. He knows the Big Plan. I'll be listening carefully to the whisperings of the Spirit.

Happy New Year. May it be one of kindness, joy, health, love, faith, and hope.

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.