Written Jun 4, 2013 9:12pm
This is neither here nor there, but we have only been at this four days?! Wow...
I know a lot of you have been anxiously awaiting this update so I'll cut to the chase.
It is safe to say that we all (and by 'all' I mean all five of us) left Iowa City today feeling somewhat relieved. I can also take the liberty of saying that if any one of us authored this, we would probably all write something radically different about our expectations headed in to this day. Mom was expecting a miracle. The rest of us, I think, fell various places in between.
We met with Dr. Karwal shortly after 1 pm today. He and his nurse spent an excess of two hours with us. The Iowa City Hospital system is impressive and it is heartbreaking to see just how many people are undoubtedly in simliar forms of duress as the place is BUSY and bustling. Dr. Karwal and his nurse were both exceptional.
We felt like we received the best care possible and left with no unanswered questions (at that moment at least!), and plenty of opportunities and avenues to answer any/all questions as they arise. The Dr, nurse and everyone in between were compassionate, caring and so very patient.
So, first, the bad news: the cancer has spread to Mom's lungs and there are multiple tumors in both lungs in addition to the mass that continues to grow in her liver. Because the cancer has metastasized to the lungs, she is at this time not an immediate candidate for surgery of any kind, nor is she a candidate for chemoembolization, a therapy that Dr. Karwal uses with some patients. Mom requires what he calls "systemic therapy," meaning, we cannot just treat the liver, we have to go after the lung cancer as well.
The good news: the primary drug that works for this kind of cancer (and will also work for the cancer in the lungs) is Sorafenib (Nexavar) and she can start that right away, or as soon as we clear the red tape/hurdles to get it in her hands. The steps are pretty simple. As Dr. Karwal described them are:
1. Get the drug
2. Take the drug (at the highest dosage available)
3. Monitor for side affects
For those of you following along, this is essentially the same treatment the Dr. Otteman described to us. The silver lining, however, is that Dr. Karwal has a back up to this drug, when/if the Nexavar quits working or if the tumors do not respond. There are also late stage clinicals and while fairly unlikely, the possibility of other treatment options if the tumors shrink.
At this point, no growth is a victory and the longer we can stay at either no growth or better yet, some tumor shrinkage, Mom is winning on some level.
Dr. Karwal described a wide range of experiences on Nexavar from cases where the tumors actually shrink, to cases where it does nothing. There is no way to know until she tries it. Barring any insurance issues, Mom will be on the drug in less than a week, which is a full week faster than our previous appointment and would be a full month behind where we could best case get in the door at Mayo.
We spent some time talking about the options with clinical trials and at this time, Dr. Karwal is not recommending the national trial, or any of other trials available via their network. The national trial is the same trial that Dr. Otteman described to us. He was less than lukewarm about it also. That does not mean that there will not be late stage trials that we can try when the time comes, and those options will depend on where we are at when we get there. In other words, the pervasive theme here is: One day at a time. Or perhaps more accurately, one foot in front of the other.
I will spend some time in a subsequent post describing the differences between the two and what we've learned about the earlier ones versus the later ones as it is somewhat crucial to understanding where things stand.
On a somewhat related note, Dr. Karwal has pulled Mom off of just about every drug and supplement she was previously on. This also means her low dose hormones. I threw that detail in there so you are forewarned if you are hanging out and she starts taking her clothes off mid hot flash. He also pulled her off the daily aspirin. Because she is a bit of an enigma/outlier when it comes to this type of cancer he's simply trying to cover any controllable element that might have some small chance of encouraging the tumor's growth.
We will go back to see Dr. Karwal in four weeks and see how the Nexavar is working. At that point he will have a good idea from Mom's labs if the drug is doing its job, and how well, and then he'll adjust accordingly.
In the meantime, a team of radiologists and surgeons who specialize in this area who will meet Friday to further assess the possibility of surgery and other therapies. We'll be kept abreast of their recommendations. I have access to a handful of doctors from the National Cancer Institute and will be able to pick their brains about alternative therapies, promising clinical trials, and seek advice. We'll act accordingly.
It in our infinite four days of wisdom from this journey, it sure feels like a theme is emerging: in every breath, every moment, stay present and be grateful.
We teased Mom on the drive that part of this journey for her might just alsobe about finally learning to establish a few boundaries and figuring out how to get really, really clear about what she wants so we can do our best to create that for her.
Physically and emotionally, Mom (and Dad) held up exceptionally well today. I would have been passed out cold on the floorboard of the car had I not been driving but we laughed, told stories, laughed some more. I cannot recall the last time just the five of us hung out, and despite the crappy circumstances we did create some fun along the way.
So, now that we know we are not taking up residence at Chez Barnes/Iowa City in the immediate future, we'd like to invite you to a party!
MOM'S RETIREMENT PARTY!
SUNDAY, JUNE 9
ISSAC WALTON, AMES
***Absolutely, positively, no gifts, just show up (so sayeth the boss lady herself). She's already bent around the axle about having a party where she is the center of attention so we can at least throw her that bone! And please, tell anyone who might not be on this page. All are welcome.
We also had a request Mom/Dad's current mailing address (since Mom is the queen of snail mail):
828 Carroll Avenue
Ames, IA 50010
I recognize that I am missing a fair amount of detail here and I will backfill later but I believe at this point it is more important to get this out. Thank you again, from the bottom of all our hearts, for carrying our family through this journey with your love, prayers, hugs, friendships and well wishes. We are so very, very humbled.
Keep praying. Keep hoping. Stay present. Be grateful.