Nick’s BHWT: Post Stem Cell Transplant Living
Medical Update:
“And if I only could …I'd make a deal with God …And I'd get him to swap our places …Be running up that road …Be running up that hill.”
– Kate Bush (inspired by Stranger Things)
After 18 days in the hospital, this newborn has now been home for three weeks after the stem-cell procedure and a whole lot has been happening post-transplant. Sorry for my tardy update!
For starters, my numbers related to my platelets, white and red blood cells, hemoglobin, etc. are all doing great and progressing in the right direction. My transplant doctor and team are very encouraged about my newborn immune system and how it’s progressively getting stronger.
On another note, I’ve experienced several side-effects since being home which I must admit has weighed on me, and even discouraged me at times. Although my side-effects are normal, it feels like every day something different pops up.
Side effects have included:
GI issues – I’ve experienced serious stomach pains which have me going to the bathroom excessively …to the point where I got hemorrhoids.
Sleep – although this has improved in the last week, I did not sleep at all the first couple of weeks. I believe this was due to my body being in shock mode from everything I’ve had to go through and my body being in serious fear/protect mode.
Fevers – had to go to the ER last week and spent the night because I got a fever. Also, I got a fever yesterday and was able to get it down without having to visit the ER. The good news is that my baby immune system has some fight in it and both times the fever went down quickly.
Rash – I currently have a rash/pimples down both sides of my face including the left side of my neck and chest area
Dizzy/light headedness – this comes and goes throughout the day and week and can be scary.
Gout – on my left toe – lots of pain and can’t put weight on my left foot when I walk.
Fatigue/lack of motivation – I find myself sleeping lots during the day with little motivation to exercise and stay active.
The medical team assures me that everything I’m experiencing from the above list (and then some), is all normal and part of the process. They keep reminding me I was given a major league chemo dose (day 1 of the transplant) designed to wipe out my old immune system and then I had the transplant procedure, with a new immune system that’s currently developing which has an impact on my body. The team is saying the chemo and the transplant does a serious number on one’s body which I currently am occupying a front row seat.
Personal Observations:
"For me, the opposite of scarcity is not abundance. It's enough. I'm enough.” – Brene’ Brown
When I was in the ER last week because I came down with a fever (protocol is when a transplant patient gets a fever, we need to go to the ER for evaluation and support), I was confronted with how much I focus and talk about scarcity – my inner dialogue was, “I am not getting enough attention …look at what I am not getting …I didn’t get something …Why am I not healthy …why do other patients get that and I don’t …I must not be healthy enough …they didn’t provide that for me …” and so on and so on.
If you think I am being dramatic or that this only relates to my stay at the hospital, in Brene’ Brown's book, Daring Greatly, she highlights how much we live and operate inside of a culture of scarcity: how often do we wake up in the morning and the first thing we say/think is that we didn’t get enough sleep? OR, before going to bed, how often do we say/think about all the things we didn’t get done that day and get anxious? OR, during the day at work, how often do you and your team discuss how you don't have enough time or resources to get everything completed? C’mon, for those in business, all I hear from my internal clients is how they don't have enough resources repeatedly.
Our language, feelings and thoughts are often centered on the lack …what we don’t have. The “lack” is what our eye is often where the focus goes.
As I mentioned above, when I was in the ER, I focused on everything I wasn’t getting (from the attention I wasn’t receiving - to the meds they didn’t give me - to the doctor on the floor not communicating to the nurses not listening, etc.). My default was, “lack” and “not enough”. I realized how committed I am (and I agree with Brene’ Brown, how committed our culture is) to this conversation of “lack.”
Although the things I mentioned above happened and are not acceptable health care practices, there were positives happening that I was blind to. For example, even though the ER was packed to the rim, with patients lying in beds in the hallway for several hours, with no one paying them any mind, I was immediately put into a private room with a door in this chaotic ER environment – I didn’t even wait for more than 30 minutes to get accommodated – I checked in to the ER, they took my vitals and blood – and - within a few minutes had this private room. Furthermore, within the hour, I was getting fluids and given Tylenol which both helped to bring down my fever – meanwhile, there were patients in beds outside my room waiting for hours.
Also, I realize how much I have been focused on “lack” and the “not enough” conversation since getting home from the transplant. As I experience all these side-effects, my inner-talk has been centered around not being healthy enough and that I’m not strong enough – in fact, I’ve become very hard on myself for not “being further along” which is so nuts!!! It’s nuts because my medical team keeps telling me how great I’m doing, other outside resources who are oncologists are telling me I’m progressing (they’ve checked my results too), and the reality is that there’s so much factual awesomeness happening with my health.
For example, I completely ignored the fact that I went to the ER for the fever, and within an hour or so my fever had gone down – that means my baby immune system is working and has lots of fight in it already. Last night, I got another fever while watching TV. I took two Tylenol and lay down and within an hour my fever went away! Again, my baby system has some serious fight in it.
I’m only able to write about these two recent examples of where I experienced myself as, “I am enough,” because someone else pointed it out to me! I was completely blind to them – completely ignored these facts. This is what happens when I/we are committed to our story – we dim the light on the parts of the experience that don't support our story …and we shine the bright lights all the way up on the parts that align and expand our story.
Going back to the Daring Greatly, Brown points out that we are sick and tired as a society of concentrating on scarcity. She believes that we are ready for something different. And I am aligned with her – I believe that when we relate to ourselves as “enough,” we elevate our creativity, collaboration, resourcefulness, and innovation because the world occurs as an opportunity. When we relate to ourselves as “enough,” we focus on everything that is working and what is possible – and what you focus on and what you feel expands. Lastly, when we relate to ourselves as “enough,” we relate to others as being the same – and when others are “enough,” we trust them and see the best in them …and they generally show up that way bringing their best version to the experience.
As always, it’s important to BE aware that I’m grateful for the people around me for supporting me in waking up – by staying awake, I’m able to disrupt the automatic …which for me has been way too many times focused on what’s not working.
Lastly, it’s especially important to BE aware of what your eye is on and what you share because through your language and words you create your reality and manifest more. All effective leaders use language and communication to shape and influence their environment – they use it to move people in a direction. The same is happening in our lives day to day, moment to moment. When I am complaining and getting frustrated by what I am not getting, and sharing that with anyone willing to listen, then I believe I am creating even more of the same experience.
So, BE responsible with the words you choose, the language you use and share, and what your eye is on. It matters …because it’s creating your experience and the results in your life.
I invite you to notice your language when you go to bed and when you awaken. I invite you to notice your inner dialogue as you go through your daily travels, and you are confronted by life. What do you say to yourself when the light turns red, or you miss the elevator? Notice the conversations you are having at work with your colleagues and what you are all focused on and repeating. Notice “what’s in the air.”
In the spirit of focusing on what is working, I feel great as I write this. And I continue to be in awe of all of you – my family, friends and colleagues who lift me up with your check-in’s, gifts, calls, text messages and emails of inspiration and hope. Thank you.
With love, believing you are enough, and healing,
Nick
P.S.
Please take a stand for common sense gun laws/reform. Donate to someone impacted by gun tragedy. Write to your Senator demanding change. Post on social media to create awareness. Do something. It’s time to disrupt the senseless tragedies happening at hospitals, places of worship, schools, supermarkets, night clubs, public places, etc. We are more than enough to BE the change.
I love it when they call me Coach Papa! Still standing after all we’ve been through!
Since coming home, we spent the last two weekends at our CT place at the beach. It’s exactly what the doctor ordered. Sincerely!
I missed the Children of the Corn while I was in the hopsital because my visitors were very limited.
Good to see nothing has changed about the role of a big brother - pounce on the youngest. My sister, Anna, is having flashbacks.
Anisa is such a blessing. She was at the hospital daily and she’s been taking care of me 24/7 these first few weeks at home. Someone take her out for a drink …or 4!!! She deserves it!
Among the many cool things I’ve received, I love my new Beatles cap (and I received a Yellow Submarine bath robe) - and yes, I get by with a little help from my friends …
In the spirit of focusing on what’s working, My sister Anna and brother-in -law Mike are so incredibly awesome. They came to the hospital to be with me for full days - they’ve come to my house to Nick-Sit - and their constant support has been so amazing and needed. Beyond lucky.
Just because I think he’s cute. Sorry, I’m being a corny Baba.