My Husband is Two Months Old

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Our days are busy. There is no spa like serenity in the Solot household. School, first days, back to school nights, the tooth fairy, potty training, a visit from the poopy fairy who leaves a matchbox car if the poop actually goes into the potty, a 13-year-old incontinent Basset Hound, big boy bed, bee fears, school fears, nightmares, toddler temper tantrums, five-year-old temper tantrums, punches, kicks, pinching, and screaming, we are one loud and frenetic family. With all the attention seeking shenanigans, it is hard to remember that I’m married to the most vulnerable person in the household.

On Sunday, October 2nd, Josh will be two months old. Today he went back to work. He often cooks dinner, cleans, and helps with pick-ups. With three little kids, all adult hands on deck are often needed. It is easy to forget that Josh is still healing. He has rebounded quicker than expected. His white blood cells and red cells have jumped up, his nausea waves are less frequent, but we still need the evil amyloid producing light chains to return to normal levels. We need to patiently wait to see if his stem cell transplant worked. I’m not very good at the patiently waiting part. I want to know that he is all better.

With normal schedules emerging, my brain likes to trick me into thinking the amyloidosis is gone and we can close the chapter on last summer’s nightmare. Unfortunately, that is not how amyloid works. I like guarantees, probabilities, control, and explanations. This disease lacks most of those things. Life lacks those things too, this is hard for my type-A, rule following, control freak brain to grasp.  We must patiently wait and see while Josh heals further. He appears strong and healthy, but he is only two-months-old and we need the pesky light chains to decrease in his blood.

Tonight, September 30th, there is a new moon. The second new moon of the month, which makes it a black moon. I am not an astrologer, but right now, I am grappling for some magic. Google says this new moom presents the chance to begin anew and move forward into the next phase. In fact, “Bustle” says this new moon is “jam packed with positive vibes, particularly for Libras.” Coincidentally, I am a Libra, so is my twin sister, and Josh’s mother. WE ALL LOVE JOSH, so I’m sure they will join me in sending any new moon magic towards healing him.

Friends reading this, those who I know and those who I don’t. I know Josh is walking around town handsome, hairless, and strong, but he still needs all the magic juju you can muster sent his way. Please pray/vibe/send energy with me and our family for a complete hematological response. I know we have no control over whether this stem cell transplant worked, but I would love to use the power of magical thinking to encourage Josh’s light chains to plummet.

I don’t want to jinx myself by writing, hoping, or even thinking of what could be or the  possibility of  being devastated by more treatment, because we will fight what we have to and I know many people have to. But friends, I’m wishing for a full recovery, we would love a respite from chemo, hospitals, and infusion centers. Fresh mountain air, ski trips, hikes, movies, chili, soups, take-out, hot chocolate, work, routine, and love sound fantastic.

On November 2nd, Josh has his second bone marrow biopsy. On November 22nd, we get the results of all this craziness. PLEASE KEEP US IN YOUR THOUGHTS!!!! Hopefully soon, I can tell you to pass your positive thoughts elsewhere. I feel slightly greedy and selfish asking for prayers, because so many people need them and I know my family is extremely lucky in the grand scheme of things and I’m reminded of our fortune daily. But I know Josh isn’t asking for any, so I am seeking magic on his behalf. As my friend Laurel says, “prayers aren’t finite, keep asking for them.” (She may have been talking about friends bringing meals, but same principle).

Thanks for the love everyone. Josh is truly an amazing human being and I am so lucky to have his hand to hold onto in this crazy world.

XO

Justine

(Thank you Julie Harris for all the beautiful photos you took of our crazy family).

 

 

 

 

 

 

 

 

A Haze with Light on the Horizon

A haze, like I am sitting in a tea cup ride dizzily tossed amongst strange and familiar faces. I feel like the hospital is a brain vacuum, my brain is being sucked out of my ears, I spin, and send out texts to my family, the nanny, friends, making sure that someone in the real world is remembering to pick my kids up from camp, feed them, wait, school starts next week, we need to meet the teacher at 4pm Friday!

The Weekend through Monday:

Since Friday, fever of 105 degrees, moved to the ICU, put on pressers, can’t move, no walking, tears, fevers, blood pressure, more pressers, sucked into a dark whirlpool, Monday morning Josh starts diuretics, a sliver of light.

Tuesday:

At 6:30am the pressers were removed. We walked. All Josh’s doctors were skeptical of Josh getting out of the hospital by August 22nd (first day of school), but they said we could stretch and try to shoot for it. The medical team’s goal was to get him home by August 26th, my oldest daughters birthday. But Josh didn’t/doesn’t want to wait until next week and neither do I. As I sat with him in a post fever chemo deloted haze and listened to doctors and nurses repeat that you don’t just walk home from the ICU, I jumped from my seat. YOU DON’T WALK OUT OF THE ICU, BUT YOU DO WALK OUT OF THE BONE MARROW TRANSPLANT UNIT!!!!!

When a doctor enters the ICU, a patient is immediately seen in ICU colored glasses, which means they are seen as sick and incapable of walking out. Doctors and nurses were not going to continue to look at Josh with ICU colored glasses. I WOULD GET HIM THE F*** OUT!

If you know me, you know when I get passionate about something I don’t quit. I marched throughout the 3rd floor/transplant and harassed every upper level charge nurse, social worker, doctor, and psychologist who works on Josh’s case. I told them that Josh must be moved from the ICU and it must be done ASAP. Also, he MUST come home this weekend. We have help at home. Josh’s dad is a practicing ER doctor. We can hire home care, but psychologically Josh must be home by our children’s first day of school.

By the end of the day, I conceded that maybe it was best to keep him over night in the ICU to watch his blood pressure, but we were staying there for only 24 hours. This meant he was off the pressers at 6:30am and then he needed to move by 6:31am on Wednesday. Throughout the day, nurses and doctors kept repeating the exit goal was August 22nd.

Wednesday:

At 6:31 Wednesday, Josh’s dad helped move him out of the ICU to the regular transplant wing. He got a view of the parking garage, which is much improved from our original view of a lone broom left on a roof. Suddenly, discharge date became Friday, August 17th. The requirements for discharge, Josh must lose 20 lbs. of fluid, no fever for 24 hours, and take all oral medications. We are weighting for the edema to fly far away, but everything else on the list has been checked off.

Josh walked 2.56 miles today, 5,369 steps. On Friday, Saturday, Sunday, Monday, he was plugged into the wall with no extension chord. He took less than 20 steps total.

Wednesday afternoon, hospital brain suck again, Josh received a call from Josh’s disability insurance, stating our claim for disability was terminated because the paperwork from the hospital was never sent to Aetna. Josh answered the phone when I was in the cafeteria, not the call you want to hear after leaving the ICU. Immediately, I turned around to call the clinic, but then decided why call the clinic, when I can march downstairs and camp out in their front office until someone faxes Aetna our disability paperwork, so that is how I spent my Wednesday afternoon.

As an aside, this morning our social worker did acupuncture on my ears while Josh napped. I guess it is used on methadone addicts, for smoking cessation, and PTSD. FYI, in case you can’t tell, cancer and transplants cause PTSD for patients and their caregivers. Diagnosis/Treatment/ICU, this is trauma like I have never felt before and hopefully won’t feel again. The needles zonked me out in a blissful haze on a hard wooden chair in Josh’s room. It was magical and centered me, carried me through today with no tears and not too much fury.

New exit date is Friday, August 19th. Fingers and toes are crossed that the edema melts off his body and we get Josh home to his kids. Thanks for the prayers and please keep them coming.

 

 

 

A Day of Tears

August 15th, may be the day of tears. I cried all over the place, the coffee shop, Josh’s room, and I stalked down a familiar nurse to tell her I needed a hug and cried to her too. When Josh checked into the hospital more than two weeks ago August 15th was the day he had in his mind that he would be returning home, but here we are and it is August 15th and Josh is still in the ICU. When we checked in, we were told that once he hits an ANC (white blood count) of 500 then he could be home.An ANC of 500 was our goal, the magic number, that would free us from hell, but today Josh has an ANC of 1,900 and we are still in the ICU.

It was a hellish weekend. Josh had spiking fevers, rigors, full body rash, and was sicker than I have ever seen anyone in my entire life. Terrifying, but that word doesn’t capture it. As he shook uncontrollably, all I could do was hug his legs, and chant to myself, Please God, heal him. Please God, heal him. Please God.

The specialists debated whether Josh had an infection or whether this was engraftment syndrome. Engraftment syndrome is when the new bone marrow kicks into action and starts producing blood (obviously not the medical definition) and creates high fevers and rashes. However, engraftment syndrome and infection present similarly, and doctors can’t risk infection when a patient’s ANC is 0, because infection can lead to death. Due to the risk of infection, the doctors placed him on antibiotics. On Saturday he had CT scan of his lungs, and initially it was read by radiologists as pneumonia. They loaded him up with fluids, antibiotics, platelets, and a blood transfusion, to protect him if there was a bacterial infection. His blood pressure plummeted, so he was put on a presser machine to keep his pressure up to protect his organs. He was given granix injections to jump start blood production to help fight infection.The granix created horrendous bone pain, but it worked. Over the weekend his ANC jumped from 0-1950.

Josh and I were hyper fixated on his ANC. In our minds, an ANC of 500 equals green light to go home. However, his ANC is 1950 and we are still here. An unforeseen road block of high temperature and low blood pressure crashed into us.

This morning, August 15th, we were discouraged, more than discouraged. Josh discovered his Amyloid due to swelling in his legs. Due to all the treatments over the weekend, Josh gained 40 lbs. of fluid. Josh believed that the fluid in his lungs that appeared in the CT scan was caused by the edema in his abdomen, but no one could do anything about it because of the risk of sepsis or pneumonia. He was miserable from the fluid, but the doctors wouldn’t let him use diuretics to release the fluid because they didn’t want a further decrease in blood pressure. We felt hopeless watching the blood pressure cuff tighten every 15 minutes, waiting for his blood pressure to stabilize. His blood pressure improved throughout the day and we hoped they would remove the pressers (blood pressure machines), only to have his pressure dip while he was sleeping. The pressers suck because Josh is not allowed to walk when hooked to them, and when I say walk, I mean literally he is not permitted to walk to the bathroom. Nurses bring a bucket bedside. The pressers feel like happiness vacuums and last night they added another presser. We had been praying to get off one and they gave us another. There are no words. Until today the only answer was to be patient and his blood pressure will rise, but it is nearly impossible to be patient, watching someone you love suffer.

Today, August 15th, the doctors officially diagnosed Josh with engraftment syndrome. He does not have pneumonia!!! The fluid in his lungs is from the edema (as Josh thought). Dr. Matous says he has no infection. On the scale of one to ten of worrying about Josh’s life being at stake, Dr. Matous gave him a one. He removed him from antibiotics. The nephrologist agreed to begin diuresis, and they continue to try to wean him from the pressers. Josh is miserable and suffering, but currently his life is not at stake. We can see a glimmer of light. The doctors agree the fluid is a problem and they are dealing with it.

Josh wants to be home. I want Josh home.The kids want Josh home. It is depressing being stuck in the hospital while other families finish their summer vacations. We were supposed to leave for Montana this week, but now we don’t know whether Josh will be home for the kids first day of school or our oldest’s 7th birthday. We choose to believe that he will be. Although we are well aware that life goes on for others while we are stuck in the ICU, it is hard browsing social media to see #bestdayever when Josh suffers in the ICU. Social media, the blessing and the curse.

“Do you know what my birthday wish is when I blow out the candles?” My daughter whispered before bed. I hugged her, I’ve missed more bedtimes in the last couple weeks than I have over the past seven years, and Josh has missed more than that. Until now, he has never spent more than two nights away from the kids. It hurts.

“What?” I asked.

“My birthday wish is that Daddy gets better and no one in our family gets this sick ever again.” She squeezed me tight.

“That is my wish too.”

“Last year I wished my stuffed animals could talk.” She giggled.

“I remember. Well, hopefully, this one comes true.” I laughed.

I pray Josh exceeds all the doctors expectations. I pray he comes home this week. I pray he is home before our oldest baby’s birthday. PRAYERS, MAGIC, BIRTHDAY CANDLE WISHES, NO MORE INVISIBLE ROAD BLOCKS.

 

 

 

 

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.