Chapter 41: Timing is NOT Always Everything

An update from Kate in the video below. 

Also, a reminder about the meal train for Kate and Kevin can be found here: https://mealtrain.com/w4q13w 

Chapter 40 - Say Goodbye to Hollywood...

Well, Party People….all good things must come to an end.  I don’t regret taking a swing for the fences and enrolling in the medical trial at USC in Los Angeles.  Through it, I was able to significantly reduce my tumor burden, improve about 5 of my cancer markers (which puts me in good shape as I enter the next chapter on this journey), and most importantly, drastically improve the pain that I was experiencing this past Spring.

What it boils down to is that the trial was an immunotherapy cocktail of two, very long complicated medical names, abbreviated as “bot/bal” – “Bot,” in addition to being a workhorse/powerhouse of a drug, is very toxic to the system.  From my first dose, I had a pretty extreme reaction to it.  I (stupidly) reported all my side effects to my USC Trial Team and they were very trigger happy to pull me off of it.  And I knew it the first session that I did not get “bot” - - I said to my trial team “What if it was the one doing all the work?”  And they tried to calm me down, placate me and tell me everything would be fine and that an average person only needed a couple of hits of “bot” for it to be effective.  

Well, my last 4 visits out to Los Angeles, there is this one particular blood test that they run and it’s been creeping up and up.  This past Monday, it significantly jumped.  I mentioned it to them, and they finally nodded and confirmed that I had a right to be concerned….that it was concerning.  Meaning that doing just “bal” was no longer good enough.  It certainly has felt fruitless, paying all this money for airfare to fly out to Los Angeles every other week, to only be there for an hour infusion of just half of the cocktail. 

I’m not necessarily back to “Square 1,” but I am quickly investigating if there is any other place in the US that I could possibly get “bot”….and then there are other modalities such as traditional chemo (which I do NOT want to go back to – I’m just starting to feel “normal” again after 2 years of chemo – please note picture - - - the hair has returned…curlier and thicker than EVER!), radiation (which would be challenging, given the location of my metastases.  And then there is the very small possibility of future trials.  I am in a good place, lab-wise, to submit my information for future trials – so I can’t say that the USC trial didn’t do anything.  It did.  It gave me time, which is oh-so-precious.

In other news, my 80-year old mother has been diagnosed with dementia, and I’ve been trying to go back to Arkansas as much as possible to take care of her (she refuses a caregiver, of course, and actually refuses my help, as well – she won’t even consider moving to PA to be closer to me so I can help her – not that I would have the bandwidth).  This is really all too much for one person to handle, I will admit.  I am so lucky that my husband, Kevin, the love of my life, is my rock and we have a strong extended family network.  And my friends are so very wonderful to me.  Especially Rachael and Lauryn, who I video chat with daily.  Without them, I would not be sane (which it’s questionable if I actually am “sane” right now). 

My work is going well – I am busy.  My golden retriever, JAX, is 4 years old and is the light of my life. 

It’s not over until it’s over, and at least I am in good fighting shape to get back into the ring.

P.S.  I have now watched “The Life of Chuck” on two American Airlines flights and I must FULLY ENDORSE it as one of the best movies I have seen in ages.  Please go watch it.  It was turned into a screen play based off a short story by Stephen King – true story!  Just like Shawshank Redemption was! 

Prayers, good juju and positive thoughts always appreciated! xo

  

 

Chapter 39 - "🎵The Hits from Coast to Coast 🎵"

The good news is that the cancer trial I am currently doing in California IS working. My latest scans showed some "problem areas" having as much as a 70% DECREASE in size, and some other "problem areas" having smaller decreases. And not one area grew in size and no new "problem areas" popped up so that's a win.

However, all of the "problem areas" are still there. I was kind of hoping some would just be GONE! Alas, I will stay on the trial, continue flying out to Los Angeles every 2 weeks, and keep on fighting. My numbers are really good - many are, in fact, "normal" - and that makes my trial team (and me) very happy.

Since it's hard for me not to be planning, I do have a couple of consults with oncologists on the East Coast coming up. I plan to ask them if they can get access to the trial drugs that I am currently taking, so that I could follow the same protocol, just not in a "trial" setting. More to come on that in the future...

Once again, thank you for your good thoughts and prayers. I appreciate it more than you could ever know. XO

Chapter 38 - "Orange" You Impressed by my OOTD?

After a small hiatus, USC finally scheduled me to fly back to Los Angeles for infusion #5 of my clinical trial.

A key component to the trial “cocktail” involves a high-dose of intravenous Vitamin C.

Because I am a dork, I decided that every infusion, I would dress in a Vitamin C theme.

1st infusion: a T-Shirt that said “You, Me & Vitamin C”

2nd infusion: a cardigan with & 🍋‍🟩

3rd infusion: a sweater with

4th infusion: earrings & accessories

and today, my 5th infusion:

But in much more important news, my numbers are looking GREAT! In fact, out of about 7 key cancer markers, 5 are “normal.” I mean, I’ve never been “normal” by any stretch of the word, but now, I am so happy to be. And the 6th marker is thisclose to being “normal,” too. The 7th one will be hard to crack, but I’m going to go for it!

I appreciate all the prayers and good juju that everyone has sent my way. Please keep them coming. I don’t quite yet know what comes after the trial (or how long I will be on it)… I’m trying to chew the elephant one bite at a time and just celebrate the small win today.

Oh and P.S. Scans are set for 8/11 at MSK in NYC, if anyone wants to say special prayers on that particular day.

Chapter 37 - Don't Stop Now...

For those who have been following my medical journey, I have some pseudo good news. I am currently on a medical trial that involves some immunotherapies + HIGH dose Vitamin C. After some mixed results after the first few treatments, I finally got some good lab results back.

These lab results tell a story that the protocol IS working! Lab results, however, are only one piece of the puzzle. I have a couple of months to go until we see if my scans tell the same story.

I appreciate all the prayers (they're working!) and would request that they keep coming my way please - don't stop now! 🍍🥝🍌🍓

Chapter 36: Mid-May from LA...And Some Vitamin Sea

 

Chapter 35 - April Showers Bring May...Hope? (And flowers, of course.)

Hi Everyone, please click on the link below for Kate's April update. Continued prayers appreciated! 🎕