Life Currently

Listening to: Lizzo and Podcast Sooo Many White Guys

Stack of Books: Born a Crime by Trevor Noah, Erotic Stories for Punjabi Widows by Balli Kaur Jaswal 

Goal in Life: Figure out a way to pay for all of Dan’s medical needs. Like, LEGIT. Not 5 year payment plans. :( Cancer is expensive.

What I’m Avoiding: Cleaning the litter box, cleaning the bird cage, cleaning the hamster cage ...Cleaning at all?

What I’m Loving: Our bedroom! (See photos) 

Thinking about: This post I wrote in 2009 (and how I quickly BLACKED OUT my diagnosis mentally a year later—seriously!) :

“I have officially weaned off of Prozac and I am only taking a mood-stabilizer, Lamotrigine (generic for Lamichtol) at 200 mg daily for my illness. This life-long illness has yet to have a stable definition, as if it seeks to echo my tumultuous moods. Dr. Cirino, my current psychiatrist, said I have bipolar disorder, heavy on the mixed episodes but also rapid cycling, so no, I am not textbook. This means my illness is defined as Bipolar Disorder NOS (Not Otherwise Specified), a catch-all diagnosis used in cases such as mine. Even if it is ambiguous, I cleave to a diagnosis at last.

BDNOS. Bananas drive north or south.

We were vigilant about my drug swap-out. Three months ago I began to slowly reduce Prozac while beginning and increasing Lamichtol. In the past, I have not proved exceptional at swap-outs. I get extreme. As I have lightly referenced, I have not been drinking alcohol for a while, and I see in hind-sight that this was key in maintaining as close to a level mood as possible. I have done very well over this time, particularly given the surprises of grief, travel, unemployment, and challenges with my FMS (Fibromyalgia, or, finches move slow.) Dan is there for me, silently, like a guardian angel. You know, a really HOT one.

But he’s not a guardian angel, as much as my mom thinks he is. He’s a man who is my husband. Every day his phone rings and there are hundreds of clients, totals, notes, plants, crewmen, machines, or weather to consider. He handles a lot of money and a lot of people from 5 a.m. to 5 p.m. In the evening, he wants to chill, read or listen to music, watch some TV, eat some food. He’ll fall asleep at about ten o’clock on the nose. Where does a partner fit in this picture, when on occasion she starts to cry in the middle of dinner or a light comedy? When she cries with no apparent reason and shuffles off to lay in bed, motionless but with her eyes open in the dark?

I never have answers for him. I don’t know what is wrong; it just so happens the world opens up in a swell of numbness and swallows me as it closes. When I feel far away in its grasp, I’ll have him touch his hand to my back. Flesh to flesh seems to work best, like an infant that needs touch as it grows. If I cry he waits for me and holds me. His hand finds a circular motion and settles into the repetition.

This is all we have worked out so far. It is not insignificant. This is life. Bananas drive north or south and finches move slow. This is the first step to being as healthy as I can possibly be. We will walk these baby steps.

Processing and accepting life is something I do with tattoos. This tattoo was done a few months after my mother died. She is represented by both the rabbit and the cardinal…I see myself in them too, as well as her mother, Ethel. The slice of cake is because she loved dessert. The poppy is the beauty of life. Thanks to DAN JOHNSON!

IT ALL STILL RINGS TRUE IN 2019.

I could have NEVER imagined I would be struggling to accept my diagnosis again and that my health would still be a main source of struggle in our marriage. And I NEVER would have thought Dan would become a stage 4 cancer patient at home on disability and STILL have to worry about me, too.

LIFE, people. It’s weird. Thanks for letting me vent.

Can a 36 Year Old Female Have a Heart Attack?

It isn’t common but the answer is yes. Did I think I was having a heart attack? Maybe. Did I actually have one? No.

This woman, at age 37, actually had a heart attack. Her symptoms were similar to mine. However, after I woke up in the middle of the night nauseous and with pressure in my chest, that feeling of discomfort remained for another 48 hours and worked its way into my neck and jaw. I tried to treat it like heartburn, and it occured to me that maybe I was developing GERD. I would have suspected a prolonged panic/anxiety attack, but in my previous experience they are accompanied by strong dissociation.

FYI. If you call to make an appointment to see your doctor, they will have to follow protocol at the mention of radiating chest pain and direct your to the ER.

So, I went. When they took my EKG and the nurses advised they’d be running back out to get me if need be, I went from doubting I was having a heart attack to believing I was absolutely having a heart attack. I went back to the waiting room and took lots of deep breaths and kept my eyes closed and listened to Agnes Obel’s Citizen of Glass on a tight loop with my headphones. It would make sense, right? I had gained 20 lbs. since we moved. I had a horrible diet–suddenly lots of meat and fried foods, and I was drinking alcohol like crazy. At least 3 beers a night. I had no excercise regimen like I had in Oregon.

But, the nurses didn’t run out to the waiting room for me in a crazy panic. In fact, I was still sitting in the waiting room when Dan arrived. I definitely knew it wasn’t serious. But now I had to stick it out and let them check me and rule out everything potentially serious. We were completely used to the way this went down. It would take hours. We made the most of it and joked about how we were experiencing a role reversal.

I have to say that my best luck was that HGTV was showing episodes of Fixer Upper, the most entertaining show regarding how to renovate and rebuild old homes. It is actually a show that Raine and I can cuddle and watch together. He loves it.

I wish I could tell you all WHAT the grand, sweeping, learning lesson was from this weird medical situation. All it did for me was point out that there is a lot that I need to attend to myself medically and I have to take it all as seriously as I do Dan’s medical issues.

That shit is hard to do. I inevitably run last in my own race of helping everyone across a winning line. I want Dan there; I want Raine there…I want everyone I love there.

So why is it so hard to get myself there?

Have you ever had a moment where you chose yourself?

Disneyland!

We did it! We went to Disneyland! Thank you to all of our amazing donors who helped make the trip possible! Thank you to Allyson Patterson, Aileen Fontana, Charlene Herzing, Doug Herzing, Patricia O’Brien, Javeed Shah, Frank Sierawski, Terrah Barkley, Bronwen Thiebes, Andrea Barry, Melissa Ritchie, April Catlett, Mark Nicklas, Linda Buchanan, Sarah Christensen, and the Lemont Township High School Class of 1995!

It was a quick trip–two travel days and two days in the parks–but the difference it made in our lives was incredible. I have told a few friends who have asked how it was, “I think it was so absolutely amazing because we went into it with very low expectations!” If you can believe it, Dan and I were slightly dreading it. We would never find ourselves interested in a place like Disneyland if we didn’t have a child, and the aspects of Disneyland that involve crowds, heat, lines, rides, and lots of expenses just overwhelmed us. As the trip neared and we started packing, I also found myself in withdrawal from two medications–suffering from headaches, jaw pain, teeth grinding, shaking, insomnia, dizziness and an upset stomach. The night before we left, I only got three hours of sleep, so I was not looking forward to travel and nervous about how I would do Disneyland with depression and anxiety / bipolar disorder.

I am thrilled to report that the first day of travel, Thursday, went fine and I got a good night’s rest in the hotel. Friday was our first day in the parks (Disneyland and Disney California Adventure) which seemed to momentarily cure me with the large amount of water I drank, hours of walking, a generous dose of sunshine, and time with Dan, Raine, and our friends. It also helped that my new medications were not giving me any new side effects! That alone was worth celebrating after the difficult last two months. Dan realized the crowds weren’t too bad, also kept hydrated with water, and fell in love with watching Raine experience everything. We timed the trip so that he would be traveling in between chemo treatments, and at the furthest outset from one. He not only did well, he was a rock star. We met our friends who came from Berkeley to join us–Dan’s best friend, Art, his wife Andra, and their kiddos Lucy and Wyatt. We discovered a decent pizza restaurant, established a relaxing routine of park and pool time, and found our groove. By the end of Friday night, as we all sat cuddled in the dark and watched the World of Color light/water show, I began to feel like I never wanted to leave.  Excited to discover we could all ride most rides and that Raine was up for anything, we spent Saturday doing as much as we could! We visited both parks again and while we didn’t see everything, we made it to some favorites like Splash Mountain, Cars Land, It’s A Small World, The Haunted Mansion, and Big Thunder Mountain Railroad. Raine got to pick out souvenirs, eat more than his fair share of sweets, and stay up late hitting the rides at A Bug’s Land in the dark with Lucy. A special treat was returning to our hotel Saturday night to hang out with Art and Dan’s other best friend, Jeff, who drove out from North Hollywood with his partner, Gwen, and a serving of one of Dan’s favorites–delicious polish sausage.

There are moments from this trip that I will cherish always… The pure joy Dan and I each felt watching Raine experience everything. The exhilaration of dropping and whirling on rides while holding Dan’s hand or hugging Raine. Laying on a towel at the pool, resting with my eyes closed while the sun warmed my skin, slowly evaporating the water all over me. Watching fireworks from our hotel parking lot the first night. Feeling a sense of pride that I could carry Raine, walk for hours, and sustain my energy while having Fibromyalgia. Also feeling gratitude as I watched Dan do the same, after all of the treatments and complications he has had since his diagnosis. We felt healthy, alive, and so very grateful.

Our last ride on the last night was Flik’s Flyers, a gentle whirling machine in A Bug’s Land. Raine rode in a life-size chinese food carton with giant leaves and twigs to create a balloon like flyer. Dan and I were alone in an animal cracker box. We sat across from each other, holding hands. As we swayed in the dark, I closed my eyes and gripped his fingers, enjoying the warm evening rushing over my shoulders and cheeks. I smiled and opened my eyes as Dan said “I love you.” And we kissed.

Life Currently || 7.22.15

So let’s talk about life lately. We are nearing the end of July, folks.

Summer is pretty busy, isn’t it? It certainly has quite a zeal to it. If it were fall or winter, I suspect we would be judging our busyness and blaming it on “back to school” or the holidays, or this or that. But because summer is sunny and the days are so generous, we feel kind of relaxed about our busyness, don’t we? Where we live, farmers are hustling and the swimming pool is crowded. Every single weekend is booked with a festival of some sorts–not to mention a personal social invitation or two. But who minds? That sun is radiant and it sets with breathtaking colors. Our children can ride their bikes or pick berries or binge watch TV all day–however it ends up, they are exhausted and pleased when their heads hit the pillows. We get a few extra hours of sunshine to pour another cocktail or get just a few more things done…Summer is rewarding despite any moments of feeling hurried. 

Raine is living it up these days. He is playing with toys, planning his 4th birthday party, getting dirty on the playground, loving books, watching YouTube and storytelling apps, and playing with water. He loves water. He wants to be in it and playing with it all the time. Nightly baths are a treat, the town pool is beyond exciting, and our inflatable slide/kiddie pool in the back yard is getting tons of action. We will start swimming lessons for him next week. He is so eager! And his social nature just keeps growing by leaps and bounds. He values friendship highly and his compassion, humor, and sweetness continue to make me proud.

It might be strange for me to note this, but we have unique circumstances and I’m his mother and I’m paying attention to everything, so I’m just going to say it…

This is his last summer of innocence.

I am astounded by how quickly children grow, adapt, and connect all those dots out there in their universe. I suspect this is the most fascinating time to be his mother, but don’t we all say that during every single phase of our children’s lives?  I choose not to be sad about this statement I have made; I am hopeful that our awareness and care as Raine understands and defines his reality with a father who has cancer will be as healthy as possible. It will be “normal,” and then not normal. And then, hopefully normal again, as it became for us–living our best to be in the balance of gratitude and wisdom in every moment. There is an instinct to protect him from it; the truth of disease. But honesty has been the road I’ve paved so far in life and I am choosing to continue. Every question he asks receives a fair answer. (“Why does daddy have special medicine?” It is what his doctor knows will help. “Where does daddy’s medicine go? His tummy?” All over his body. “What is daddy’s medicine?” Chemotherapy.

I genuinely believe that this blemish upon his life–this thing that will make him different and his family different will be a beautiful strength for him-it will create a powerfully special quality about him. I can already see him using it for good. (Oh my, what an ambitious mother I am. Ha!)

When the going gets going…Keep going. We are enjoying Dan’s maintenance chemo schedule and the better level of wellness and energy he has. Despite our record heat this summer, Dan forges on with full work days and resuming hobbies and activities. He is cooking, gardening, canning, playing fantasy sports, bathing Raine and playing games with him. He also manages a date nights with me and still supports me in all of my undertakings, challenges, and ambition.

Hugging him is truly the best tonic. I am so aware of his height and weight–the shoulder blades, the waist, and the stretch of curving skin between. Just feeling that part of him and breathing with his breath, smelling him–it all relaxes me and helps me. Also I utilize strong cocktails and weepy and/or angry venting phone calls or dates with my girlfriends. I am working so hard to manage my stress, anxiety, depression, and chronic pain. I am reading, organizing, and challenging myself on a daily basis. I am seeking a near-perfect balance of work/play/rest that I feel I have the luxury to seek only because life suddenly uplifted for us; everything is being re-written for me. It is utterly overwhelming even though it is really a blessing. And there are tremendous growing pains but I feel rewarded. My work days are becoming my own, my workouts are becoming empowering, and my gratitude is growing beyond anything I ever imagined.

How are you spending your summer? Do you have projects? Trips? Special outings or dates? Do you feel overwhelmed by summer’s busyness or do you love it!? What is your favorite way to relax?

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.