Living Life In Incomplete Sentences

ANC graph

Today Josh is six days post transplant. Last night he was up sick all night. He did well this morning and then had extreme abdominal cramping this afternoon. His white blood cell count was 24.  Josh and his dad drew a graph this evening of the progression of Josh’s ANC levels. He is pretty close to rock bottom, but the good news is from down there, there is no where to go but up. We hope his blood count rises quickly.

For Josh, there is the expected nausea, vomiting, diarrhea that he knew came with intense chemo therapy, but for him the worst part has been the loss of focus. He literally is trapped in a room and cannot focus on anything for more than five minutes. He gets a lot accomplished in five minute bursts, but he constantly must change positions and switch activities. Josh, who could win medals for watching stupid movies over and over for hours on end, has not sat through a single movie while trapped in a room on the transplant floor of PSL.

Wake-up. Sick. Get Medicine. Color. Pace. Draw Maze for kids. Dot-to-Dot. Sports Center. Write card to kids. Olympics. Nap. Walk. Sit. Eat. Play Yahtzee. Draw. Walk. Play Cribbage. Pace. Maze. Dot-to-Dot. Eat Soup. Walk. Rest.

Despite his inability to focus he has forced himself to walk 2 miles every day and he created this beautiful platypus maze for our middle daughter.

Palatypus maze

Nine days into the hospital stay, it still feels like we are living in an alternative universe. Before SCT (stem cell transplant), I worried about what after school activities I should sign my kids up for, I wasn’t cognizant of this reality. Truth, there are always people suffering and struggling on this planet. Truth you never know anyone’s story. These truths along with many others are burned into me. It still feels more science fiction than reality, an absolute surreal shift, plucked out of our privileged lives and placed on a foreign planet. We are stuck here until Josh’s ANC reaches 500, for at least another week.

Josh is working harder than he has ever worked not to get a promotion or an award, but to get back home. He is fighting for everything that I (we) have always taken for granted. When he gets home, it will mean everything.

This is painful. It sucks. I cry. I smile. I cry again. I smile. I cry. I love him. Love gives us super powers. I discovered this after birthing children, I’m seeing it again, we are super-human, not alien, but loving humans have heroic strength, which means when pushed we all have super powers.

THANKS FOR THE PRAYERS, VIBES, AND LOVE, PLEASE KEEP THEM COMING.

We keep on trucking, hopefully, out of the transplant ward soon.

XO

Justine

 

 

 

Stem Cell Update

In life and medicine Josh likes to use analogies. He can find an analogy for anything. Typically sports analogies to describe a patient’s illness or treatment, maybe an analogy to express how corporate medicine needs to change. When he tells me these analogies, I might roll my eyes, I don’t always get them. Many people do and they endear him to patients, sports lovers, and colleagues. But the first night we checked into the hospital, Josh was perplexed,”Babe, I can’t even come up with a good analogy for this, I mean solitary confinement, but that doesn’t even cover it.”

Driving to the hospital, I came up with an analogy. A little dramatic, but not too far off the ball. After two days of chemo and steroids, all I could think of were the torture scenes from the TV show 24, where Jack Bauer (played by Keifer Sutherland) is a C.I.A operative. He is the subject and perpetrator of numerous torture scenes throughout the shows run. In these scenes the tortured individual is locked in a dark room. Josh has a big window with lots of light, but the differences end there. The tortured loses track of day and night, the month, day, it is lost immediately. He is hooked up to machines and tortured until the brink of death and then slowly nursed back to relative health only to be hooked up to the machine again and brought down once more. If he breaks out of his room, then he is confronted with a maze of hallways and sterile artificial light. People approach him in yellow gowns, masks, and blue gloves. It is foreign, time, place, routine and life as you know it disappear.

The above analogy is how I feel watching Josh battle through this process. For the past two days Josh was fed a mix of toxic chemo and steroids via the central line in his chest. The steroids are supposed to counter the awful side effects of chemo. Instead the steroids caused extreme abdominal discomfort, the nurses give him drugs to ameliorate the discomfort and those drugs create more side effects. A constant battle of remedying side effects with drugs that create more side effects.

Josh is brave and fighting through this madness well, however, it is disheartening to know the worst is yet to come. He Facetimes with the kids and they love to see his smiling face. Each day he walked a mile around the hallways. He amazes me daily with his fight, charm, and bravery.

I hesitated sharing the torture analogy because other patients may read this who are about to embark on their own stem cell journey. I don’t want to scare people because Josh will get through it and so will many others. It is amazing what we, humans, are capable of. However, Josh has been continuously frustrated by doctors and nurses who glaze over the side effects of painful procedures. For example, the bone marrow biopsy, “it’s not that bad, you don’t need sedation”, followed by extreme pain as they drill through his hip. The central line placement, “you will just feel mild discomfort” – really a plastic tube is being inserted throughout his chest… Or, we just harvested 40 million stem cells from your body,  but”no biggie, shouldn’t be a problem.” Optimism is great, but if you gloss over side effects, then patients start worrying that something is wrong with them. Why am I in pain, when I should only be feeling mild discomfort? Probably because the doctor who told you there would be mild discomfort has never had a central line placed into their chest. You never entirely know anything until it happens to you.

Josh is an amazing doctor. He is an excellent diagnostician whose patients adore him. He is borderline brilliant with bedside manner, which is hard combination to find. I can only imagine the excellence he will achieve as a physician after having the experience of being a patient in such a traumatic and profound way. He laughed at himself counseling his patients regarding their children prior to having his own children. Laughable, text books cannot prepare you for a colicky baby or the fear of an infant spiking a high fever. The human element is not conveyed in a text book. Similarly you cannot fully understand suffering from a chronic illness until you suffer a chronic illness.

Josh receives his new stem cells tomorrow morning. His new “rebirthday” will be August 2nd, the day before my grandfather Quigg Newton’s birthday. Quigg was a leader, life long learner, loyal, and dedicated to providing a good life for his family. Josh is all those things and so much more. Josh adored Quigg (and I think the feeling was mutual).

Please keep the prayers/energy/jedi force coming that these stem cells bring a future of health and happiness for Josh and our family.

Thank you for all the love and support.

Love,

Justine

P.S.

I’m more of a sharer than Josh, so this blog may be “super fajitas” for him. I like to document this journey because I want friends, family, the world to know – the rockstar warrior superstar that my husband is. I am immensely proud of him.

AL AMYLOIDOSIS SUCKS

BACKGROUND:

For those who do not know, my husband Josh was diagnosed with AL Amyloidosis in April 2016. AL Amyloidosis is a rare blood disease where misfolding plasma cells in the bone marrow produce light chains in the blood called amyloid that attach to organs and cause tissue damage, (by no means an accurate description). There are less than 4,000 new diagnosed cases of Amyloidosis in the United States each year, which makes this an extremely rare disease. Amyloidosis is most closely related to Multiple Myeloma, which is a rare form of leukemia. As such, many treatments for the two diseases are the same. Most people diagnosed with Amyloidosis are in their 60s, but Josh unluckily discovered he had Amyloidosis at 37-years-old.

As a physician, Josh noticed swelling in his ankles tested himself to make sure he didn’t have a blood clot then tested his urine and blood and realized he had nephrotic syndrome. He went to a nephrologist who then ordered a kidney biopsy, which showed Amyloidosis. He then underwent a bone marrow biopsy, which also came back positive for Amyloidosis.

When Josh was diagnosed with Amyloidosis, I didn’t know what it was and immediately googled it. Don’t do this, a google search reports that patients diagnosed with Amyloidosis have 1-2 years to live. SHOCK! WHAT? HOW? WHY? I CAN’T LOSE JOSH! I cried for two weeks straight. I couldn’t wrap my head around losing Josh, I still can’t, and luckily two doctors assured me that I don’t have to. Two doctors assured me that Josh will live a long life with this disease. He will be around to see his children get married and there may be a cure in his lifetime.

“Why did young healthy Josh get Amyloidosis?” I asked Dr. Smith and myself a thousand times. “Is it just like randomly getting struck with cancer without a family history?”

Dr. Smith responded, “One out of three people will get cancer in their lifetime.”I don’t know the exact statistical chance to get Amyloidosis at 37, but pretty much Josh won the rare disease lottery. Although this is all bad news, the good news is with respect to this disease Josh also won the lottery, right now it is only affecting his kidneys (not the heart, liver, muscles, or nerves), which is amazing. He has little kidney damage and he is in amazing shape.

Due to his relative health, Josh opted for the most aggressive form of treatment to achieve long term remission and will be having a stem cell transplant. A stem cell transplant is a bone marrow transplant, except in his case they will be using his own stem cells. July 25th and July 26th doctors collected close to twenty million of Josh’s stem cells, which were then frozen at -130 celsius. He will be admitted to the hospital on July 30th and for two days will be blasted with high dose chemotherapy (melphalan) in order to wipe out his entire blood system. He will rest a day, and then be reinjected with his newly cleansed stem cells. The day of transplant is literally deemed his rebirthday. Every immunity he has acquired in the last 38 years will be completely wiped clean. He literally will be put on an infant baby’s vaccination schedule once his body begins to recover.

Josh will be in the hospital for close to three weeks, until he is deemed safe to reenter the world. He will be able to see me and adult friends and family, but the children are not allowed to visit him because of the risk of infection. He is heartbroken to be separated from the kids. He will be out of work for 2-3 months, which is sad because he just started a new job that he loves. We are focusing on the positive, looking at three months as a blip, like maternity leave, which women take all the time. (FYI, paid medical leave readers is not only for new mothers).

Originally, he was supposed to be admitted to the hospital on July 18th, but because of a lab mishap with Josh’s stem cells the transplant was delayed two weeks. We were upset about the delay and devastated because Josh was put through a brutal collection of stem cells twice, 40 million stem cells were taken within a two week period. The night of his second collection, I thought he might need a blood transfusion, he was sick, fatigued, cold (shut off the air conditioning), but a day of rest and he rebounded. Josh is a champ.

Due to the upsetting delay, we had more day dates than we have had since having children seven years ago. One of Josh’s best friends visited from Pittsburgh and spent the weekend with him. On Monday and Tuesday Josh gave 20 million stem cells, Wednesday we had a relaxing Boulder date and went shopping on Pearl Street, Thursday we played 18 holes of golf, Friday we went for a long hike near Chatauqua, and Saturday Josh checks in the hospital for his first dose of chemo therapy.

Friday night we had a Star Wars pajama party with the kids where they stayed up late, ate Chinese Food, S’mores, ice cream, candy, and watched movies. (Thank you, Sarah for the delicious ice cream). Josh’s last night of fun with the kiddos for a few weeks, he is the best dad.

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Today we checked into the hospital. It was surreal, driving to the hospital on a sunny day, young families shopping at the farmer’s market and riding their bikes on the bike path while  Josh will be stuck inside the hospital for one month. We checked in thinking we could get a cart and together go back to the car to get his things. Nope, once Josh entered his room, he couldn’t leave the hallway. I took the cart back to the car, called my twin, and cried. I can’t believe Josh will be in this small room for almost a month. I can’t believe he has to fight this shitty disease. I can’t believe small tragedies go on around us every day as the world keeps circling and the sun keeps shining.

Yesterday, I was brainstorming what to write as an update. We hiked miles with our dog, our shoulders burned by the sun, our lungs expanding to get us up the steep hills we have climbed so many times. I felt blessed. We are blessed in love, family, and friendships.

Today as we left our home, my five-year-old sobbing and her two-year-old brother imitating her screams. I felt heartbroken. This is officially the hardest day of my life thus far. Healthy Josh driving our car to the hospital to be blasted with toxic chemo and taken to the brink of death to be brought back to life with his own stem cells. It feels torturous. It feels unfair.

I wish, pray, hope for remission. I’m wishing that Josh can come home soon. I hope he will breeze through chemo and this seemingly endless stay in an artificially lit sterile room. I pray he stays sane. I pray my children feel loved and secure. I pray for a cure. It seems desperate and pitiful, but I pray and hope that everyone that has ever known or cared about me, Josh, his family, or my children, send us prayers. I want to believe in the power of prayer, healing thoughts, and love. Josh is private, but I want to rally all the love I can muster and direct it at him. Family, friends, world, we  need some magic sent in our direction.

The first round of chemo starts at 4pm, until then we will be playing Yahtzee, reading, and walking the halls, imagining ourselves in a claustrophobic train car heading through Europe to eat pasta and drink wine in colorful Positano, Italy.

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For the next few months, I will keep family and friends updated on the blog. We appreciate all the friends and family who have rallied around us during this tough time – meals, ice cream, wine, texts, phone calls, emails, cards, have all been greatly appreciated. It is always nice to know people are thinking of us, so never second guess texting, calling, or emailing. We love it. Thank you, thank you, thank you…