Home » AL Amyloidosis » Stem Cell Update

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.




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.

5 thoughts on “Stem Cell Update

  1. Yikes… Hard to read, Justine, and thank you for going for it and writing so brilliantly this incredibly difficult life experience. It’s BRAVE and amazing of you! Josh is a warrior. I keep saying that, and certainly thinking it. And you are so right that he will truly know being a patient the way most doctors can’t fathom. What a hero’s journey!

  2. We are so sorry that all of you are having to endure any of this… particularly Josh. We are sending prayers, light, love, and admiration. We know this must be so incredibly hard. We are rooting for Josh as he faces this mountain. Tons of Love, Andrea

  3. Justine, I understand exactly how you feel and how your husband feels. I had my SCT in Oct 2013. I had never been sick before, so I wasn’t the best patient. I didn’t like feeling so vulnerable. But, I finally gave up and let my caregiver (my husband) take over. I didn’t have to be the strong one all the time. He wanted to be my strength. I also felt wrapped in the warmth of love and prayer. On a side note, my SCT smelled like vegetable soup. Please stay strong and this too will pass.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s