Guess What? I'm Still Here. And It's February

I ended the year 2015 with a bit of a bitter back glance (and a secret note to the future that I had better not get any more s**t.) This might come as a surprise because I talk so much about joy, gratitude, and hope in my writing on this blog. The truth is, after a year like 2015, full of a desperately sick husband on chemotherapy, a mother increasingly lost to me in the impenetrable fog of her own mind, closing two businesses that I started in good faith, crushing financial problems landing us in the office of a bankruptcy lawyer, and essentially pushing myself to the limits of my own strength in heart and mind–and then imploding into mania and depression, I was DONE.

Goodbye, 2015. I need a change.

2          0         1           6 .

It feels open and ready, gentle and generous. Each day is 24 hours of opportunity: chances to make decisions that encourage new ways of thinking, new ways of living. I am embracing that sense of freedom and cultivating peace and generosity toward myself. I am also taking some leaps of faith to align my values with day-to-day life. And guess what? It is so empowering! One little change leads to another, and another, and, before I know it…

Y         E         S .

This is living life. 2016 brings change that is soft and rewarding–but not without heartache. However I can say that my bitterness has evaporated, so my heartache can be teachable. This is all we can really ask for.

It does help that we are all medically doing very well! A recent visit with Raine’s pediatric urologist (for his condition he was born with–Non-Obstructive Bilateral Hydronephrosis of the kidneys and ureters) revealed that the concerns we faced 6 months earlier are now unwarranted. In fact, the improvement for Raine’s kidneys and ureters (all FOUR!) was so tremendous, they put us back on a schedule of just yearly check-ups. (Hurray!)

I am finally in the hands of a proper psychiatrist to manage my meds. Per her indication, I have a revised diagnosis of Bipolar I instead of Bipolar II. (I guess? I am not sure I agree...) She explained that I was born with this and we can see that rapid cycling was triggered as young as early childhood–about 6 or 7. Today, I am cruising along well on a combination of Lamichtal/Cymbalta/Trazodone and with her expertise, we are tweaking the dosing as we go along so that we can reduce my euphoric episodes as much as possible, without landing me in severe depression. I have missed meds on several occasions in the last four months and the significance is astounding. I know that I absolutely have to medicate in order to be healthy enough to take care of myself and my family. As I learn more and more about my condition and apply that lens to my life experiences, I can do nothing but grow by leaps and bounds in both understanding of myself AND having compassion for myself. This is a departure from my life-long habit of mental and physical self-blame, shame, and punishment. Of course, no need to go into great detail. Essentially–my diagnosis explains so much and ultimately brings me great comfort. Counseling helps Dan and I address how to make the best decisions for our family (and each one of us) with regards to my health. We have switched roles just a little bit! Luckily we have the same counselor we began with, who specializes in individuals and families with an advanced cancer diagnosis. This has helped us make further changes based on my limitations and taught us how to communicate better. I am working again, part-time, and focusing on a pretty tight regiment of sleep and wake times, meal times, and medication times. It sounds restrictive but I find assurance in what I believe is the simplicity of order. Clearly Chaos–even when extraordinarily beautiful–wasn’t working for me before.

Dan’s cancer remains stable–no change whatsoever–by evidence of his latest set of scans. These are expected results for ALK tumors that have had first-line treatment with Cisplatin followed by maintenance with Alimta. However, Dan is charting 2016 off the map. He’s outside the box of norms for his diagnosis and treatment. We can no longer compare him to any other previous patient “like” him. This is beautiful and brings great hope. He will complete one year of maintenance chemo in March, with no reason to stop. Dr. Duffy emphasized that with no indication of even the slightest change in the locations of his tumors (which we presume to be all necrotic, right?!) and the sight of otherwise healthy lymph nodes, organs, and brain tissue, his next scan or two will be no cause for alarm (a vacation from scanxiety?) Dan is competitive and couldn’t help himself from asking her if he set a record. She laughed with him and revealed that her only patient to last this long on maintenance (before the cancer activated again) was 12 months. He pumped his fist and cried “Yes!” I assured him there would be no trophy for this type of thing. Dan pushed further: “What about your friends here? Can you ask around?” Dr. Duffy explained that the other oncologists don’t utilize maintenance chemotherapy in the way that she does. “OK, how about the East Coast?” He wanted her to text Dr. Shaw and find out what her record is. I laughed and laughed, trying not to resist it. Cancer providing us an echo of silence in our lives gives us a levity we grew unaccustomed to. It’s not a blessing you ever expect to be grateful for–but here we are.

Somebody get this guy a trophy.

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.

One Year Later: Bipolar Disorder and Chocolate Chip Cookies

As the one year anniversary of Dan’s diagnosis came and passed, I had nothing to say. My world that I created to survive his diagnosis was not stable; it was darkly fracturing. Pins of pressure were poking at me from every angle–The anxiety about Dan’s condition and prognosis, trying to be a good mother, trying to be a strong and capable wife, starting a new graphic design business, and the revolving anxiety about my mother’s condition.

To everyone who has asked me, Leah, How do you do it? I could no longer provide an answer. I can’t do it.

I had to explain to Dan how I had self-medicated and coped with his illness by riding the highs of mixed mania episodes–spending with credit cards catastrophically–and abusing alcohol. I could reside equally in a 24 hour period of both delirious pleasure, believing I could do anything (I am f*ing Superwoman!) and atrocious apathy and irritability. I felt like a monster. I wanted to throw things, weep, drink it all away, cut myself. All the old habits of the past rushed back, lining up so quickly I was dizzy. And they all felt so familiar and tempting! I made poor choices that put myself and others at risk, as well as poor choices that jeopardized our already fragile household.

My doctor and therapist worked fervently to help me out of my newly diagnosed Bipolar (rapid cycling) state–a condition that I have denied for nearly a decade. They added Lamictal to Lexepro, then Lithium, Zyprexa, Seroquel, and back to Trazodone for insomnia. Each medication change made me feel either more like a monster or completely dazed and staring at the wall.

I was exhausted.

I stopped writing. I stopped taking photos. I stopped smiling. I stopped working. I stopped feeling any pleasure or hope in anything. It was painful to be around friends and feel so detached.

I am spending a lot of time watching TV and binge-eating chocolate chip cookies.

But today, I am hoping this is a turning point. Maybe if I tell the world what is really going on, I can get out from under the oppression of it. I have to try.

Truly, this is not the picture I planned to paint of myself and our marriage at the 1 year mark. In the photo above, Dan looks SO happy and healthy. I can say that I felt happy, too, but I also felt drugged and somewhat broken. It goes to show you that you never know what is really going on when someone shares a photo on social media.

Please continue to keep us in your thoughts as we address my medical needs in addition to Dan’s. 

Life Currently || Summer Recap 2015

I believe what I would remember most about this summer (and the quickly approaching end of it) was 1.) Trying to come to terms with the demands of my own health, and 2.) A fierce nesting phase as I tried to both prepare to launch my new graphic design business and transform our house into a rather lovely home. Before Dan was diagnosed last year, I was so busy working full-time managing the shop in McMinnville and operating my LuLaRoe business, our house was pretty empty and neglected, save a lot of toys. I also spent little time focusing on my health other than occasional diets and taking meds without stopping to consider whether or not they were actually working. Fast forward to Dan’s diagnosis and my wild emotional free-fall. Along came summertime with long, bright, hot days and I went into overtime finding a new passion to earn income and decorating our house. I channeled my emotional struggle into countless hours obsessing over everything from ergonomic desks, paint chips, baskets, and wall decor to business cards, napkins, pencils, filing systems, and patio furniture. If you follow me on Pinterest, you can easily tell by my large collections on boards like Organizational Tips & Products and Crafts Ideas/DIY, that I had more than enough ideas to wrestle into reality. So that was what I was doing all summer–with, I might add, the most abundant sense of urgency. Did someone set a countdown for the anniversary of Dan’s diagnosis as the day that everyone will arrive at our home and knock on the door to visit and have a drink over some graphic design consulting!?! That is how it feels. By the time I had converted our guest bedroom into my office/studio space, Dan requested a ban on any online purchasing due to the buildup–a kingdom, really–of cardboard boxes. (Raine, however, thought it was very fun!)

I have done my absolute best to stay sane while processing Dan’s diagnosis, taking care of Raine, and changing my medications. My doctor and I are tweaking them endlessly to find the *right* combination. I must say, I have to remain optimistic that we will find *it* or I will absolutely go mad with hopelessness. At present, I am trying an anti-depressant/thyroid/bipolar combination with supplements on the side and nutritional changes that compliment my exercise. My chief complaint currently is the bipolar med makes me STARVING–GIVE ME THE PIE ALREADY! ALL THE PIE! I have gained 20 pounds since Dan’s diagnosis, when I had dropped to a mere 105 (awfully wispy!) For a woman with a history of an eating disorder, that is a tricky situation but I have taken it in stride and tried to focus more on my overall wellness than my pant sizes changing. However the last five pounds that were tacked on in about 1 week due to the medication feel like an insult. Gaining weight while working on depression and anxiety is a bit of an insult BUT WAIT, WHERE IS THE PIE ALREADY?

What was I saying?

I took my first escape in July. I flew to Denver where I visited Hattie, then Allyson in Boulder, then Sarah in Castle Rock. For six days I was alone–without anyone “needing” me. I even lost my phone the first day at the Denver airport and found myself literally unplugged for the first three days of my trip. I wish I could tell you that Colorado was an oasis of wonderful relaxation and soothed my soul but it wasn’t. My depression and anxiety go with me wherever I go. And being removed from my daily routine as well as Dan and Raine, well, I was a bit manic and binged on my drinking and shopping repeatedly. Oh readers, are you still with me? I don’t mean to sound obnoxious but I’m trying to be honest! I wasn’t in very good shape during that trip. Because I haven’t been in very good shape period. I’ve become increasingly desperate as Dan’s situation has quieted and broke into a base line of sorts. Scans are coming back good and stable. We know we have multiple medications to use for ALK yet ahead, which is reassuring. Our life isn’t getting interrupted by ER visits and blood transfusions. In a bizarre lung cancer IV world, this is chill. But while it is chill, I am unraveling.

Of course, there to do his JOB is Dan. He is my partner, my best friend, my lover. He is my husband and his job is to help me as I unravel. He is trying so hard to not worry, worry, worry about ME as much as I worry, worry, worry about him. So we are both two worriers stuck in worrytown. The only secret I can whisper to you is…Choose to laugh. Find the things that are funny. Find the words that will make your partner smile. Find what you can… And go to therapy. Haha! Seriously. The best couples I know are in therapy, both individually and together. AND they are in healthy, happy marriages/partnerships. The luckiest thing we found this year was the woman who sits with me once (sometimes twice) a week and once a month with Dan. For FREE. She is doing it to help us because she cares and understands that our situation wreaks financial havoc. She listens to me, challenges me, gently supports me, and offers the same to Dan even though he has very little to say. (He is a very zen, well adjusted gentleman. I hope Raine has inherited his psychological disposition!)

Speaking of Raine, he has had a great summer. He completed his first session of swim lessons, planned his 4th birthday party–which was a great success, and logged many hours playing outside at parks and home with his water slide toy and kiddie pool. He is certainly looking more and more like a little boy and less a toddler. True to his given history, he had one accident for the summer–on the 4th of July, when he fell off of the top of a car. Luckily, nothing was broken (except maybe daddy’s pride, because he was watching him at the time!) Raine saw his urologist at Doernbecher’s and completed his 4 year check-up, which required some bloodwork and he did such a good job sitting for it; we were so proud. These days he is in love with his books, stories, and buddies at bedtime, playing superheroes, anything Frozen or Paw Patrol related, and, still, watching YouTube videos of other children playing with toys. Of course, he is the ultimate source of optimism in my life.

How Am I Doing?

Everyone’s sense of humor –including Dan’s and my own– is getting me through this transition into our new life. I appear pretty gosh darn normal if you run into me these days, and I think it is taking some people by surprise. But really, what am I supposed to be like? A hot sobbing mess with a fanny pack of tissues ready at-the-go? I have my moments. They just aren’t in public. (Yet.) So everyone is asking, How am I doing?

I am doing OK. I am doing the best I possibly can be doing. I think it is pretty good. I suppose if I was going to make a list of my top things to get you through your transition from normal family life to terminal cancer family life, I would say…Sense of humor, loved ones (including your children if you have them) your own doctor, and your hobby.

♥ The belly laughs have been the BEST. I mean, we all know this. Anytime you have a great loss, horrible news, or something that turns your life upside down, that moment where you genuinely laugh afterward is like gold. Friends, family, Jimmy Fallon, Raine, whatever it has been, it has felt good to laugh. It makes me feel like my spirit is so resilient. Forget the guilt, if you feel it, go with it. Laugh! Heaven bless Joy.

♥ Loved ones. I don’t know HOW someone who is diagnosed with terminal cancer (and their spouse/family) get through it without other people supporting them. It makes me unbelievably sad to imagine the other people walking around in our situation who do not have my best friends, our families, co-workers, and greater support system. I just can’t fathom being alone. If I was alone in this, I would still be in his hospital room the very first day, coiled up in the fetal position on the floor. And the thing I have learned, most of all, is let them do it all. Let the helpers swoop in and just do it. Let people just do whatever the heck they want to do. Don’t say, “I’ll get back to  you and let you know what you can do to help” when they offer to help. You won’t. At least, you might, but mostly, you won’t. You will be too flabbergasted to sit down and figure out what help you need. So let them come. Let them cook, clean, drive, pick up toys, send packages or deliver food, force you to take a nap, do your laundry. Just roll with it and don’t micro-manage. You can’t micro-manage. And as for your children, be in the moment with them. They bring you into the very millisecond of infinity with their questions, needs, demands, curiosity, and charm. Focus with all your might on them. Raine has brought me into the moment a million times in the last two weeks and it saves me from despairing. Despairing is grieving for the future and he is not my future. He is my Right. Now.

♥ My doctor told me to call her anytime for anything. She has my back. I am on a pro-active anti-depressant given my history of major depressive disorder and anxiety. I also have an anxiety medication that I can take to settle my stomach and let me breathe and eat. The first five days of Dan’s hospitalization were the most difficult. We got bad news upon bad news and I was in a constant state of fear. My body was in fight or flight mode 24/7! What will happen? What will they tell us next?! So may panic attacks. The only way I know how to describe how I felt is like when I tried out for cheerleading as a little girl. When I sat on the gymnasium floor and waited my turn, I fiddled with my gym shorts and wiggled my feet in anxiety. I wanted to do really good and I was so nervous to stand out in front of everyone, but I knew I had to. I felt like I could either vomit or pee my pants. Only for cheerleading tryouts, the adrenaline was exciting and helped me do my best. In this situation, adrenaline is exhausting and pointless. It might have helped power me through a few days but that was all I needed. And then I couldn’t turn it off. I couldn’t eat. I couldn’t sleep well. I couldn’t concentrate. Now I am doing better. I still grind my teeth a lot, but I am working on relaxation techniques. Baby steps.

♥ Do your hobby. Do what you love to do. Play an instrument, sport, sing, read, etc. Do what you naturally crave doing. It will be your outlet. Mine is writing. It is also shopping, but I am focusing on writing. I don’t want my husband to have a heart attack in addition to his current situation.

♥ The only other thing I would add is join a support group. We haven’t found ours yet, but we will. And I am assuming that fills a crucial need, to have the ability to listen to and talk to others who are in a very similar situation as you.

♥ Oh! And most of all! Stay off the Internet. There is no article, blog, research study, or miracle cure that is specifically about your partner and their situation. So it is irrelevant. Besides, you will get approximately a billion articles, suggestions, blog posts, and notes about what you and your partner should and shouldn’t be doing from everyone who loves you and has time to sit and search the Internet, and you can just print those off and take them to your doctor and say, I did my due diligence. Here’s a bunch of stuff. Tell me what you think. And then they can speak to your exact situation. Boom.

Thank you again, everyone, for all of your love and support. I’m doing my best. xoxo