Almost Half Way

Has it been a month since my last update?!

I am going to add some fun and humor here, answer some questions everyone is maybe too polite to ask, and provide an update of how this is really going so far.  

Am I going to lose my hair?!

Definitely some, but not likely all with a 30% chance of it becoming noticeable.  Check in late October, right in time for Halloween and don’t assume it’s a costume in case it turns…em’ interesting? I’m only washing my hair every few days, I am not losing my hair in clumps, but the comb has more strands than one would like.  So I am hardly combing it in an abundance of preservation, I am letting it go to Its natural curly stray-strand self-made personality. No, I am not ‘cold capping’ as it’s an uncomfortable consistent regimen that is more intense than my known level of self-commitment to dedicate to habit. It’s not a cool cap, it’s a very cold cap and a serious schedule of adherence for months and long hours for success…

With the help of some AI fun, here’s to curls, dreadlocks and inheriting the local Sierra Nevada hippie-dippity summer vibe and sunshine, peace, love and Jesus.  No matter your vibe, religion or belief, I will take every prayer, good vibe, energy, spirit, grounding, and cleansing signal you can send my way!

How are you feeling?!

Proudly, I am in 6 of 16 infusions in, at the end of this month with the July 28^th treatment I will be 50% of the way through! Going into chemo, you expect the hair loss, tossing cookies and paleness that gives you the distinctive ‘you’ve got cancer’ appearance.  None of that is true! Hurray! Even though you feel that way on the inside. 

Here is what is true, they test my blood before each and every infusion which is good to monitor me closely and not plunge me into potentially life threating levels of risk.  I am anemic, immune compromised, and my chemo doesn’t like my thyroid replacement, so it’s got me in the lowest thyroid (hypothyroid state) I have ever been.  It gives the sloth definition a crawl for its money.  Side effects after chemo run pretty on schedule, wooziness defined as being an inebriated 4-year-old, and muscle draining fatigue and brain fog.  I am not to be trusted with a full glass of milk or a sharp knife.

My last two chemo day coordination friends and family teams that have picked me up to take me home after chemo, even had the same comment.  I look puffy.  This picture here, is an accurate depiction of that ‘puffy feeling’ leaving the chemo chair after 5-6 hour infusions. I counted, it’s an infused total of 2-2.5 Liters of Salted IV solution, steeped with all the other chemo cocktails, and boosted with some magnesium, potassium, hydration, oh goodie steroids, and long-acting anti-nausea meds. 

Result - PUFF!  I can hear my body screaming WTF every time!!

Seriously, I hope you are laughing along with me.

Am I working?! What are you doing with all that time on your hands?!

I have so far just been on FMLA, taking approx.10 working days off per month to provide the chemo infusion days on Tuesdays, and somewhere halfway through Thursday phase into the land of Oz like wooziness as I put it to my very accommodating and understanding boss whom I have known for over 8 years and been my manager just since January.  I am essentially part time, but it doesn’t feel like that as the land of Oz is not easing, as it can be an overwhelming amount of energy to do the simplest of everyday tasks. There’s a non-chemo week every third week, and I get a slurry of more work done.  I am taking just two days off this week on a non-infusion week to take a ‘break’, and it knocks my work volume and available meeting schedule significantly.

Things are going well, and hope they remain so, but its definately a life change, and I know this can be an unpredictable journey. I am working diligently building my safeties and plan.  I absolutely have loved my career, my colleagues, and the pursuit of emerging research and science.  It is a large part of my personal identity, successes and provided blessings, while also needing to take real stock and the real fight that is at my feet right now.

Each week is just getting a tougher, and need to give my body the time and space, and healthy daily habits to give myself the best opportunity for a best outcome. 

In knowing myself, it will shatter me to be medically forced into stop working, so I know I will make that decision proactively.

The Support of Friends and Family from Near and Far

I have been shuttled to and from chemo that have run more seamlessly than any professional ride service I could have ever hired. My friends, family and volunteers haven’t even had to be asked, and the willingness to help beyond any expectation I could have ever dreamed.  I am so profoundly thankful and will continue to say it over and over again.  After an infusion, my clarity just isn’t what it should be, and driving would be bit risky when I am feeling some side effects. 

Having Fun Along The Way

4^th of July- I was invited to a few BBQ’s and as much as I would have loved to be there, I spent most of the day on the sofa as it was a side-effect day, and recognizing I am immune-compromised, I need to be so careful. Getting sick right now would be accompanied by at the very least delaying chemo, and even potential hospital visit.  I was able to get out for a quick hour and see the fireworks from a perfect vantage point, and certainly helped lighten my mood for the day.

Family Visit - My Aunt came up from Sacramento and picked me up from my last Infusion and brought me home.  The next day , cousins from the Red Bluff area were able to come visit and have lunch, and spend the afternoon.  I was so thankful they made the drive and visit, a very nice time well spent and went to Toffinelli’s café in town where they have an outdoor garden. It was such a nice time, and am so thankful they made the journey to spend some time!

Girlfriends visit - Two girlfriends from the Bay area came up to visit for two nights over the weekend.  They brought lots of goodies from Trader Joes, went to dinner at Five Mile house where they have an outdoor garden, and had icecream after.  I think they needed the break from the busy bay area, as much as I needed to be restful at home and low key.  The stars were amazing to enjoy from the deck in the evening.

I'm Headed to the Remote Sierra’s

This week, I am taking a couple days away and escaping to a remote lodging location with a girlfriend along the N. Fork of the Yuba River. I can’t go camping these days, so going with the next best thing just about an hour away.  I’ll stick my feet in the water and hope my worries and cares can float downstream and mentally unplug and relax.  I have gone into this with a positivity and going into this fight, but I also just need to rest and reprieve.  A good girlfriend that is starting nursing school soon, is also going, and I am sure she can use a break before diving into her intense studies.

My Chemo days are set for the next couple weeks and have house guests lined up nearly through July.  There are some side effects days that are tough, usually Thursday afternoon through Sunday morning where I become one with the sofa and let it pass. 

These are the days a little visit and hello are welcome.  

I will absolutely continue to do my best, remain positive and pursue the best outcome for as long as this will allow me to do so.

Thank you for being here.

The Real Things Haven’t Changed.  It is Still Best to Be Honest and Truthful; to Make the Most of What We Have To Be Happy with Simple Pleasures: and Have Courage When Things Go Wrong.  – Laura Ingalls Wilder