October 1: Day 123

The sun dropped across Ada Hayden in a magnificent water color display, and I could see fish jumping from the water all the way from the road. I drove to Dan Woodin's Celebration of Life, and in that moment, I intrinsically knew that Keith Barnes had been called home. I received a message before I walked in to the church validating that gut feeling; Keith passed. 

It did not take long for the two of them to get to work. 

I just received a call from Bliss, Mom is approved for the Avastin, will see Dr. Otteman today at 3. Ten minutes later Dr. Karwal's nurse called from Iowa City with Dr. Karwal in the background; they assured me they would be coordinating with Bliss and all would be on the same page before she arrived. 


Friday Dr. Karwal listened to Mom describe her signs of decline, and then declared our needing to sail in a different direction. When he left the room Mom had a moment. When I asked her what was happening in her head, she said, "I just keep thinking I am going to get my miracle." 

I pointed out that perhaps she was too focused on that miracle, and it was clouding her vision from another one: the miracle of modern medicine allowing her to be here now, or the miracle of each moment of these 123 days. 

Today there was another... 

September 27: Day 119

The news from Iowa City was not what we hoped, but based on some of the signs I describe in my prior post, not a complete surprise. The AFP tumor marker has increased (to around 29,000) and Mom's liver function numbers are headed precisely in the wrong direction, which made today a clear and easy choice: it's time to adjust the sails.

The good news is that while compromised, the liver is still functioning. The even better news is, there is another treatment option Dr. Karwal feels is worth a shot at trying. 

The next drug (Avastin) is a fairly common one for treatment of many different types of cancer, just not liver cancer, however it is not currently FDA "liver cancer" approved. This can create some hiccups in the procurement process as well as with insurance, as generally insurance companies do not like to cover experimental or non FDA approved drugs. 

Knowing this, the folks in IC started the ball rolling to get Mom approved for treatment with Avastin last month, as we were somewhat in the air with her symptoms and results. The insurance company promptly responded and declined coverage, based on the treatment "not being medically necessary." An appeal process is now in process on that end.

I mentioned in my last post that Mom made a cameo at Bliss last week as she was having some respiratory issues she felt needed checked prior to today's visit to IC. During that visit, the folks at Bliss also felt that Avastin would be a great next option/step, and they also started the ball rolling from their end too.

After pulling resources together in both places today, I have a healthy dose of faith that Bliss will be able to get us the drug/start treatment as early as late next week or early the following week. 
This is quite a bit faster than expediting via IC as they indicated it could take as long as 'a few weeks', and they are all for doing what works fastest. There will be no happy dances until she is tethered to an IV pole, but I feel a WHOLE lot better about it than I did when I marched into Bliss this afternoon.

I am somewhat oversimplifying, but there is a slight policy difference in Bliss and IC, in that Bliss is willing to administer the drug after the initial denials are received via insurance and a pre-qualification is passed direct with the drug company and IC was needing to wait until details were worked out/fully approved or disapproved by insurance to initiate the direct contact/proceed.

Drs. Karwal and Otteman will put their heads together to decide if it makes sense for Mom to continue on the Nexavar at the same time she receives the Avastin or if she'll discontinue the Nexavar altogether and just take the Avastin. The drugs are meant to do totally different things, so it'll be interesting to see what they decide. For those of you humored by my second grade explanations, the Nexavar is a molecule inhibitor that attacks the primary cancer itself. The problem with this is that because Mom's cancer is so advanced, the cancer mutates very rapidly and eventually the primary cancer mutates to a totally different form, hence the early success and then later disappointment. The Avastin attacks the blood supply TO the tumor, and essentially tries to starve it. 

On the issue of the swelling through her midsection and legs, Dr. Karwal explained that this is a fairly common side effect and he has prescribed a water pill as a starting point. The portal vein typically serves as a byway for blood from the digestive tract and spleen to the liver. Because the PV is compromised, the excess fluid that cannot get through fills the abdominal cavity. While there is the option of draining that fluid, Dr. Karwal felt the pill would be a better first step as the 'manual' drain method only tends to work for a couple days. Hopefully the water pill will work, and she'll pee it out instead. She also needs to be very, very diligent about salt consumption.

I will post more details as we know more. Enjoy the weekend: one breath, moment, step, day at a time. 

With Gratitude,

September 26: Day 118

We travel tomorrow bright and early again to Iowa City and could use a dose of your happy thoughts and prayers.

Mom has been doing a much better job of getting out of the house, enjoying this gorgeous Fall weather, friends, and grandkid football, but her stamina is deteriorating. She is sleeping quite a bit more, retaining some fluid and made a cameo at Bliss in the past week. 

We are coordinating doctor's reports today and are anxious to see what Dr. Karwal feels are next steps. It is easy to jump aboard the panic wagon and deem the apocalypse near, but I like reminding myself (and everyone else) that we are not the doctor, and there are a certain amount of side effects that build up and beat a person up over time just from taking a drug like Nexavar. So we take a breath, stay present, put one foot in front of the other, and give thanks for each day. 

This week served as another grim reminder of just how precious the gift of time is as we said 'see you later' to our long time family friend Dan Woodin and yesterday I made a pilgrimage on behalf of myself and my parents to the Hospice house to thank and send off from this life with love/admiration my mentor, confidant and dear friend Keith Barnes. 

Both men have been such beacons of light throughout their cancer journeys; never allowing a diagnosis to define them. Both men and their families have also made a concerted effort to reach out to the Doyle clan amidst their own struggle/journey. We can all learn from that.

There aren't adequate words to describe the volume of wisdom/teaching/love these two beautiful people leave everyone blessed to know them; I will continue to be infinitely better from the influence of both.

I will post an update tomorrow as soon as I am able. 

***ON another note, check out what Mom's Fellows Family dreamed up. We would so love it if you could show up and "Shine a Light" for Mom, whether it is cheering on those crawling, hopping, skipping or running, tailgating, or eating...just show up, we would LOVE to see you! DETAILS: http://www.shinealightforsusan5k.com/

August 30: Day 91

Cancer: something evil or malignant that spreads destructively.
One definition. 

 a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis.
Same word, another definition.

In these 91 days of fleeting stability, yet crystal clear, beautiful moments of absolute presence, I know one thing to be true: the former definition is much, much more destructive than the latter, and yet they are equally deadly.

There are no adequate words to describe what happens when 'the cancer' takes over; 'the cancer' being the literal cancer or the metaphoric one. 

Mom won the shitty cancer lottery from diagnosis. 
We felt this week what happens when the metaphoric one takes charge. It was akin to what I imagine living through a tornado to be; sucking up inadvertently every ounce of anything positively vibrating in its path. 


Three days ago we learned that the tumor marker and the liver function numbers were right back at diagnosis day levels. The doctor, wanting to weigh this information against the other two elements I describe in my previous post, ordered a CT. 

The three days in between are this: panic, pain, sadness, literal madness; an attempt at sinking fingernails into concrete. 

Today, we set the sails back straight. 

The CT showed that there is no significant tumor growth. In fact, there are signs that some of the smaller liver tumors have shrunk. The primary tumor remains the same size, however, it has changed forms to something akin to liquid magma. (Kidding, I really just wanted to see if anyone was still reading.) 

The Nexavar has, indeed, morphed the primary tumor to a liquid form, which is 'sometimes' a side effect. To the trained physician, this means the drug is still working. 

The tricky part of the equation is that there is not a clear cut formula to dictate next steps. There are no absolutes. What we do know, however, is that given the advanced state and Mom's type of cancer, the next-step treatment options are extremely limited and there are no guarantees they'll work. So to paraphrase (like a redneck), there ain't no sense quitting what's not broke!

So we march on, another month, same verse. 

Mom fully realizes after a few tough moments and conversations that she let her monkey mind win these past three days, if only for a few fleeting moments. 

Our job is to ensure it doesn't win the war. 

The way she feels right now is the new normal. 

Rather than trying to win a medal for being 'she who endured the most pain,' she needs to take control and manage it. 
Similarly, she needs to take control of her mind. I told her today that nearly every time I've had the stomach flu in my adult life, she's lectured me immediately after I stopped hurling that I needed to get myself up, go outside, take a big ole breath, and start somewhere. That I would feel better if I just left the house.

It's time she took her own advice.