Our 3rd CT Scan

Today we discussed the results of Dan’s 3rd CT scan with Dr. Duffy.

To recap, the very first scan introduced us to NSCLC Adenocarcinoma in all its glory–to me, what looked like splotches of ink and dark blobs inside his chest. Our 2nd scan was the first scan to tell us if “IF” his initial chemotherapy rounds were providing effective treatment. We were pleased to discover –Yes! Dan’s tumors were either stable or reduced in size, including his primary tumor in the left lung. Of course, these are always the results we want to hear! The alternative would be that there are new tumors or existing tumors have grown. The week leading up to a CT scan is torturous for me. I don’t actually even realize it until the few days beforehand (and then I stop being able to fall asleep and notice I am irritable and nervous). It was pure relief to hear today that the cancer is stable. Thank you to everyone for all of your encouragement, positive thoughts, and prayers. We are fortunate that there is no evidence of new growth or resistance to the treatment.

At this point, the reality of his illness is really sinking in during day-to-day life.

Just the last three weeks, we have had to deal with the side effects of his steroid use from his brain inflammation, and the side effects of weaning off of those steroids. He is three weeks past tapering off the steroid, but it is only now completely leaving his system. Combined with very aggressive chemotherapy, it has become tough. He has suffered overall muscle fatigue and especially weakened thighs, resulting in a few moments where he collapses. He has very frequent dizzy spells when standing, so it takes more time to move about after sitting for more than 20 minutes. At this point, he has lost nearly half of his normal blood volume (and is therefore anemic, awaiting a blood transfusion once he reaches the safest level to do so), suffered severe constipation always the two weeks following each treatment, and endured increasingly extreme fatigue and a reduced/limited appetite. On the bright side, we are grateful that his throat sores and thrush have been easily treatable, and that he still has an appetite for much needed nutritious food – fruit, juice, vegetables, and a few animal proteins that will help replace the muscle mass he has lost.

Together with his doctor, we decided to continue two final rounds of this chemotherapy, for optimal results. “Optimal results” continues to be —No new growth, stabilization or reduction. His particular cancer loves to grow and spread quickly like wildfire, and Dan’s genetic mutation (ALK) particularly loves to go to the brain. It is quite The Beast! But so far, treatment is disrupting those plans and our hope is to see a good scan again in 6 weeks and then move Dan to maintenance chemotherapy–kind of like a low grade version of what he has been taking that will work to keep the cancer from progressing. Some stage IV lung cancer patients can have successful maintenance therapy for as much as 12 months on just a single infusion drug –pemetrexed, and this should be the case for Dan as his ALK mutation historically responds well to pemetrexed. Again, that is our hope! And even beyond 12 months! Go Dan! 

We know that the next 6 weeks of treatment on the current chemo (including cisplatin) will be rough, judging by what seems to be a cumulative effect over the past three months. However we are also hoping that the side effects of the steroid will subside. Overall, we do expect him to continue to have the severe fatigue and some discomfort intermittently. His left lung that harbors the primary tumor is still full of fluid and the lower lobe has collapsed. We will have the fluid removed soon and also have surgery to prevent fluid from accumulating again. That will help his breathing and reduce his overall discomfort and risk for infection or complications in his lungs.

We feel like we are in a home stretch now that we confirmed his final two rounds of this chemotherapy treatment. It is going to be tough but we are looking forward to the end result—Getting him on maintenance therapy, seeing his lungs healed from the clots and fluid, and normal, healthy growth of his body’s fast growing cells so that he can enjoy food again and have energy to play with Raine and work more again! I will be calling upon our local helpers much in this next phase, so please use our Lotsa Helping Hands site (sign in to see our calendar of needs). If you haven’t set up your account yet, please do!

Thank you again, to everyone who has us in your thoughts. It matters. It helps. Soon I will share more about that. For now, I am off to bed with the wonderful gift of relief and joy given our results today.

One Week in Photos || 1/6/15 - 1/13/15

I made a new friend recently, Jane, who advised me that she was inspired to wear lipstick in the New Year. She wrote, ” I have decided to embrace each moment by celebrating more and wearing red lipstick. Me, wearing red lipstick is a pretty funny resolution as I am someone who forgets I own make-up most of the time, but for me it means that I am wearing a badge of confidence in a way. A statement that draws attention to myself, something I tend do avoid in the majority of circumstances, the year of red lipstick.” This struck me so deeply. I, too, have never been one to remember there is makeup in my cupboard, and Dan has always insisted that I don’t need it. But it isn’t about “needing” it. So I decided to wear lipstick everyday. I decided that if I have to wake up to so many unknowns, I am going to take my time and present myself with the utmost care possible as a mother of a toddler and wife of a gorgeous stud muffin who happens to have stage 4 cancer. I will not wear sweat pants to the grocery store. I will not walk into the coffee shops with puffy, swollen, crying eyes. I will face each day and each person with a respect for myself. I will dress and put on my lipstick and pretend it is the first date with Dan. Over and over again.

There are so many reminders each day of how lucky I am. Yes, we were dealt a shocking diagnosis. However, we didn’t lose one another in a split second; I didn’t fold my hands beneath the rush of hot water in the faucet at the kitchen sink and suddenly die of a brain aneurism; Dan didn’t slip away in a deep night’s slumber due to sleep apnea or ambiguous heart problems. These things have happened to others we know recently and it breaks my heart but also reminds me how we still have each other. Tonight, Dan expressed his grief that 2015 was starting off so poorly with the news of a beloved college friend’s death. I believe he hoped 2015 could be a healing salve upon the wound he suffered in 2014. Instead of comforting him, I found myself reminding him, each year has its sorrows. I didn’t mean to dismantle his hope–I just wanted to remind him that there are no “good years” or “bad years.” Grievances happen no matter what, amid joy or what is even commonplace; while we are brushing our teeth, while the coffee sifts and settles in the press, while the mailman slips envelopes into the mailbox, while we kiss our loved ones or pour a generous glass of wine.  A best friend’s father was diagnosed with terminal brain cancer at the same time we discovered Dan’s cancer. What more must we bear? Unfortunate news always burrows into our most comfortable spaces, either softly or abruptly, upon calendar days busy or not. Nature does not consider the marks we have made on paper, what babies we have brought forth or not, what goals have been achieved.  Let us love each other regardless of a time frame, and try to repair the hurt that incurs without warning. Let us love each other on healing days–days with no trauma–a rigorous day that is our work, or one with quiet moments–a generous dash of salt, a tender kiss to the forehead, a long snore settling us into a quiet dreamscape.

Many say, I am blessed. We are blessed. I feel that often, and I say it, too. We are blessed. But truly, I mean to say that we are enjoying the luck of life. To me, life is purposeless, unpredictable and an uncontrollable force–but we do not need to fear it. We must relish it and make our own meaning from it to cope with what we encounter. My heart swells for every moment I have experienced in my life so far–for every sweet gesture as much as every moment that also gave me such great disdain.  I don’t know why so many people want to emphasize an afterlife given our situation–I have studied it and I have considered it greatly since childhood and it has persuaded many choices and promises that I have made. And it informed great devastation just as much as great hope. I ultimately feel, What is better than the pulsing activity of the present life? I seek tearing open my understanding of a “Kingdom on Earth,” or a “Peace of Mind” by pressing into what is ugly and difficult and broken here and now. We are Here. We are Now. Isn’t that our gift? We have the possibility to Love and be Loved. We have the opportunity to tolerate others as if we are building nests of carefully placed honesty and hope. We can impart wisdom to one another that we have gathered so clumsily upon our individual paths. We can heal our busy, disconnected minds —such dizzy masses like bees swarming and aimlessly rooting for honey out of reach. We can calm down and connect. We are all so lucky; we are all so ready. We have the power to choose in every moment. This is what I am trying to teach my 3 year old son.  That is what I am hoping to reveal to myself in moments of despair. There is so much more than just an individual self.

Friday the 9th found us in our community of chemotherapy patients. We continue to receive Dan’s infusions at St. Vincent’s hospital and most days, he is the first to arrive and the last to leave. He has three medications to receive intravenously, as well as protective fluids for his kidneys and anti-nausea medication. It continues to take about 7 hours. Tack on another hour for bloodwork and processing. We wore our lucky socks and Patrick cheered up Dan with another visit. (For anyone interested in visiting, his next treatment will be Friday, 1/30/15 [9-5 pm] and it is in the East Pavilion.) Dr. Duffy wasn’t scheduled to meet with us, but when she saw us in the treatment room, she stopped in for a “social” visit. She was so dismayed to hear that we hadn’t kissed in a month (Dan had thrush as well as severe throat sores from his chemo, and I was also afraid that any cold or flu going around was in me—So there was absolutely no kissy kissy for a while…..) She urged us to get our KISS on and also assured Dan he could have a soft egg if he so desired. (Often chemo drugs compromise your immune system and make you vulnerable to food-borne illnesses. He was discouraged from eating sushi or other undercooked meat, as well as eggs. But we discovered a soft boiled egg (which he craved) wasn’t going to present much trouble. Hallelujah, because this round, his taste buds are giving out on everything–He can only tolerate orange juice, egg, bread, and sausage. No more pizza, cheese, bacon, tacos, milkshakes, or soup.   Please note: If you want to provide us meals (much needed!) please contact me first to discuss what is best. 

New chemo luck charms included more fun socks, as well as a pair of lions from Dan’s college friend, Andy, and his family Sara, Kira, and Layla. They sent a note reading ” To be a Herzing is to be a Lion at Heart.” Raine was THRILLED to have a matching animal with daddy. This was a special bonding moment for them and I am so grateful that Andy and Sara sent these lions. Dan has been doing a lot of sleeping and Raine is at an age/phase where if you can’t play with him —Cars, hide and seek, Play-Doh, or trains—He really doesn’t want much to do with you. And he has become used to daddy being sleepy. He will order Dan, “You Sleep!” and require mommy to accomplish the task he needs or play how he wants. He expects daddy to just sleep. He is also picking up on daddy not feeling well, too. When we came home tonight, as soon as he walked in and saw Dan laying on the couch, he asked, “Are you feeling good Daddy?” He is seeking out whether or not daddy can play. I recognize Raine is living in the world of play, so you can’t blame him. And so far in his short life, I have set the precedent as the cuddler, the one who kisses and reads books. And Daddy was much more the one for rough-housing or active play. But that has changed and Raine is trying to sort it all out. He is pretty subtle, but I am watching him like a hawk. I had traumatic experiences and ideations as early as 7 years old and I know I would have benefited from regular counseling, so I am very in tune with what Raine could potentially need. We are so excited to have found a referral for a Play Therapist in our area, and we know that when the time comes, he can go to her. For now, he is content to play and enlist me. As for daddy, he now knows daddy’s “special medicine” and “sleep” is because daddy has “cancer.” But we are a long way from him understanding what that means. I am just doing my best to communicate openly with him. He is truly as smart as a whip so I won’t pretend otherwise.

Our winter in Oregon so far has been unusually dry. I have relished the dry sunlight and also been faithful to take my Vitamin D. With Fibromyalgia, PCOS, and Depression, I am quite the “pharmasaur” again. Dan always teased me for the amount of drugs that I took, but now his pillbox doubles mine, so he feels silly for chastising me. You do what you have to do when your health is compromised. I would never wish cancer upon Dan, or anyone, but I can say that this experience has taught him a little bit about what it is like to be me—depending on drugs or supplements, routine doctor appointments, and the frustration of managing side effects or symptoms. It has shed light for him upon my lifelong struggle. It is validating to have him sympathize, but it is also despairing to see him unwell.

Sickness, or illness, is new to him. He never even had a headache or a flu his entire life, so cancer and its side effects from treatments are really blowing his socks off. His ears ring and soften in and out, his indigestion leaves him in pain and frustrated, his desire for touching me is absent–his intentions toward the day are unmotivated as he bears the weight of heavy fatigue. His throat fills with sores, his tongue grows rude with disrupted taste buds, and his gums and roof of his mouth flash white with thrush. His skin is dry and the hair of his scalp has yet to fill in. Follicles have sprouted again since radiation treatments, but have stalled. The prolonged use of steroids to treat his brain swelling caused swollen features and puffiness in his face, but it is subsiding now that he has weaned off. Muscle mass is a constant battle–as his body fights and repairs under the stress of the cancer and chemotherapy drugs, energy is devoured in muscle instead of fat. So we tweak snacks to what he can tolerate and will provide protein.

I have stepped up big time to take care of him and Raine and I am dangerously close to over-extending my energy and health. I am not sure what is the right balance, but I am seeking it ever-vigilantly, always. I am following my doctor’s orders strictly–taking Vitamin D weekly (15,000 –every week, all year long) B12 daily, zinc daily, Multi Vitamin daily, Omega 3 supplement daily, Trazodone at night for restorative sleep, Lexepro and Naltrexone for pain and anxiety/depression, as well as Sprintec for PCOS. I also blitz our rooms with essential oils–Thieves in our living room to eliminate airborne bacteria (a lemon, cinnamon, eucalyptus, rosemary, clove blend), Frankincense in our bedroom (associated with tumor reduction and useful for visualizing or improving one’s spiritual connection, and centering/focusing the mind to overcome stress or despair) as well as Lavender (an adaptogen, and therefore able to assist the body when adapting to stress or imbalances, as well as a great aid for relaxing and winding down before bedtime) in Raine’s bedroom. Our naturopathic doctor, Dr. Reuter, encouraged diffusing oils as well as topical applications, so I started rubbing Raine and Dan’s feet with oils. It reminds me of when I was a senior in high school and lead a young women’s Bible study. I had a lesson where I actually cleansed the feet of each girl, as Christ did in the New Testament scriptures. There is something very humbling about washing or massaging another person’s feet. It is both stinky and beautiful. Such is life. 

Lovely Gift: Our Bracelets

Thank you to our dear friends Lorri and Carmen, who gave us these matching bracelets for Christmas. It is such a special gift–so lovely and thoughtful and keenly appropriate–I just don’t have words. They are beautiful pieces, designed by Lisa Gaffney of Heart and Sol Designs, and inscribed with the custom phrase that I wrote in my first blog post: 

“Everything around us is extraordinarily beautiful and luxurious now.” 

We wear them daily and think of one another and how lucky we are.

One Month in Photos || December 2015

Jim and Char arrived again on December 9th to stay with us for ten days. I had quite a bit to do on my holiday to-do list, so it was great to have extra hands to help and keep Raine entertained. He is really loving his special time with Grandma and Grandpa when they visit! He especially likes to play iPad with Grandpa and show him his toys. He is a little less interested in Grandma until mommy and daddy leave, and then he gives hugs and holds her hand. Dan was feeling pretty well the 2nd week of December, so we made it out to some holiday parties together and he was able to help us with our baked goods for friends and family. And of course, he was thrilled to use his Traeger grill again and cook for his parents, as well as take them out to his favorite lunch spots. With him at work, I concentrated on my business, cleaning/organizing our home (the ever-fulfilling coping mechanism…how many times can you rearrange things?!?) and setting up some new connections for guest blogging and adding new features to this blog. I am pleased to announce that I will guest blog for LCA for Valentine’s day. I’m really looking forward to that and reaching a greater audience. I’m not sure where this is all taking me, but I’m content to be along for the ride.

The latter half of December was tricky as the house quieted after Jim and Char’s departure, I continued to try to do pop-up shops, and Dan fought a common cold in addition to new side effects of the 3rd chemo round. I now get Raine to and from daycare, feed him, bathe him, play with him (basically try to keep him entertained, alive and safe, and in bed. Surprisingly, this is NO SMALL FEAT.) Our routine used to primarily call for daddy’s help with all of that, while I was typically working late at the store or focused on my computer for my business. But now Dan needs to rest. So my obligations have shifted. I would like to say that the switch to a more prominent mom-type-role is going well, but I’m not feeling naturally suited to it. I’m not a cook. I’m not very adventurous. I am in pain or tired so often. I’m stressed out about the drastic change in our budget. However I am doing my very best to be intentional with Raine. I try to keep myself in the moment and embrace silliness, be prepared and/or adapt to sudden changes, and keep my patience. I am sure he eats too many french fries, watches too much iPad, and complains to his friends about how lame I am playing CARSANDGUYS. But there is no shortage of cuddles and kisses, compliments, and tender care.

There will come a day when concepts of cancer and serious illness will begin to percolate in his mind, and then realizations about losing loved ones. He will connect dots and have more questions than we can probably imagine that don’t have easy answers. I am doing my very best to make sure he continues to have the most firm foundation of support and love from Dan and me. What we have established and build now together, each day, can never be taken away or undone. We continue to love to cuddle in bed together in the morning. I’ll admit, I really love blankets and pillows and lounging. It’s gold. Add chocolate to that mix, and I am in heaven. Especially on a bright, quiet morning with my boys –all four of them– cuddled around me. I just feel like the luckiest version of myself ever possible.

Those are the moments I am looking forward to in 2015. I want to smother myself in moments of touch, kisses, glances, giggles, and nearness. Good conversations and long stretches of reading. I’m looking forward to creative projects, and more food and drink, of course.

Change the Future of Lung Cancer

Ross Camidge, MD, PhD, University of Colorado Cancer Center from TEAM DRAFT on Vimeo.

Now that we are into a few rounds of Dan’s treatments and know his genetic information, it is time for a 2nd opinion.

Dr. Duffy has recommended Dr. Camidge, a world leading expert on Lung Cancer. I love this guy’s passion!