November 19: Day 172

Our greatest fears lie in anticipation. When those fears are coupled with a death sentence, a timeline, a diagnosis, a set of circumstances, the fear can take on a life of its own. This is cancer. 

Mom started this journey feeling crappy. Turns out, 'that' crappy was nothing compared to this crappy. She started out with a diagnosis. 'That' diagnosis carried with it a tragic finality and was defined; but it's always the anticipation of the next slip or physical decline that packs a far heavier punch. This is cancer.

We are quickly reaching a point where we find ourselves asking Mom, what quality of life she has in a particular moment, hour, day, and what we can do to continue to provide her with some more of that. Increasingly, she doesn't know.

We know from the diagnosis, the Google searches, the incessant questioning of doctors, second opinions, message boards what's coming, but still cancer has a strange way of consuming everything and yet also creeping up on you. It shows up when the walks one day become shorter even though the air is probably thicker, the inability to get from place to place becomes harder but the car is farther and yet we're also searching for a wheelchair, the legs feel too heavy and then won't just move on their own, the naps drag out and then the bed is in the living room, the conviction of the voice leaves and it appears my Grandma's creeped in. 

The physical deterioration slides in and sneaks up, even as you watch closely. And yet, peering back only a month, and it seems so much brighter there; even though the grim reality never really looked all that great then either. Again, cancer.

The primal aspect of our humanness hangs on, continues to fight, and yet, in the middle of all of this disease, all this fear, it seems the only answer lies in letting go. Not to be mistaken for giving up as the two are so unfairly intertwined, but indeed, in letting go. It is only in letting go, that there is peace, presence, no cancer, acceptance, stillness. We still play our best hand, we still fight like hell, we put all the right pieces in place, but we also let go. It is only here that we can begin to ponder that there might just be something far better ahead than that which we may leave behind. The body's ultimate failing might just be the only vehicle that can effectively carry that message, given how awesome life is here.


Thursday (Nov 14) marked the fourth infusion of Avastin, Dr. Karwal's trial (for liver cancer) drug. Ideally and yet improbably, four infusions in, Mom's condition would improve. We'd march on, continue the infusions. Except, four infusions in, her condition is deteriorating fairly quickly. Given the decline, the question becomes, is the drug making her sick, or is the cancer making her sick(er)? Or both? 

The accumulation of both the Nexavar and now the Avastin do bring with them some side effects, although both drugs are typically fairly low on the totem pole of awfulness, as far as cancer drugs go. So Thursday, Dr. Otteman will do another CT and evaluate where to go from here. 

If the CT shows that the cancer is still stabilized/not growing, a decision will be weighed over whether the side effects and physical decline are worth continuing. If the CT shows that the cancer is growing, that means the Avastin is not working, and we will discontinue infusions. At that point, the road forks and the focus becomes ensuring Mom is comfortable and as pain free as possible. 

Today, we let go...and take a long, deep inhale of this gorgeous sunny, crisp, November day. We continue to lean in on so many of you (and will even more in the coming days). We are forever indebted, grateful, and in awe.

October 31: Day 153

I am long overdue for an update and more so a very public thank you. That being said, I have struggled more than is typical to come up with adequate words of thanks and gratitude to even begin to scratch the surface of the pure love, light and grace that was showered upon our family at the "Shine A Light For Susan 5K" that took place last Friday.

We are all so very humbled and in complete awe. As I told Jamie White, the fearless leader behind the operation, (along with the entire Fellows Elementary team) she and "the team" gifted our family an outpouring of love, support, hugs, and generosity that we will remember the rest of our lives. 

It was a beautiful, completely overwhelming and awe inspiring thing to look around and see hundreds and hundreds of people who touched my parents or one of our lives, quite simply 'just show up'Everyone of us from Mom, Dad to our extended family was gifted the opportunity by your presence to bask in this miraculous outpouring of love and groundswell of support. 

To each and every one of you that showed up, sponsored, volunteered, ran, contributed, sent love, prayers, support; THANK YOU. We may not have had the opportunity to hug, talk to, honk at, or thank you all in person, but we KNOW you were there and we are so very grateful. The Fellows team also created for all of you, I believe at least, something tangible to do, in a sad and seemingly dire situation that seemed there might not be anything to do.There was so much love and light there. We are so very, very grateful.

The great learning in this event and much of this journey for me, has been about presence in various forms and through this event it became to so clear to me yet again, there is such power and abundance in just showing up. 

In the past when someone close to me struggled with a loss, a disease, an unfortunate circumstance, I would analyze to paralysis finding the proper words, or response, many times to the point that I did nothing. I know now the simplicity and grace in presence; a hug, a card, a note, a passing squeeze.

Show up for someone today. The gift is in the giving.


On another front, we visited Dr. Otteman today and Mom is finishing up as I type, her third infusion. She will receive one more and then there will be more scans to assess how the Avastin is working. Thanks to Peg Powell and Sharon Gabrielson for keeping Mom company during her infusion so I could go back to work. I am fresh out of "family emergency" hours, so Peg has been doing double duty helping out with some of these longer appointments. 

If you've seen Mom of late, you may well already know that her abdominal cavity is exceptionally swollen, the point it appears she is about to deliver an alien or something any moment. While not painful, this is exceptionally uncomfortable, and it is putting pressure quite literally on all sorts of respiratory and digestive functions, and it is greatly inhibiting her mobility. 

She has had thus far the CT, xray, and ultrasound to try to get to the bottom of this. After ruling out more/new cancer, they thought it might be the result of fluid retention, and after ruling that out, they decided it is gas. Only today did when Dr. Otteman shared with us the scan did I see HOW MUCH gas. The xray looked like she swallowed about 25 ping pong balls, each one representing a different gas pocket.

There can be a number of reasons for this, the most notable and likely of which is food. In short, the carbohydrate extravaganza must come to an end, and she also very likely also will need to discontinue lactose in her diet as well. One of the 'perks' of Nexavar in some people is lactose intolerance, and our suspicion is that she has not yet recovered from this and that perhaps she is also losing/lost her tolerance to gluten. 

The decrease in stamina and mobility is exceptionally disheartening and frustrating for her, but to hear today that gas is the culprit is probably darned near best case scenario, and quite workable. Part of the balancing act will also involve getting up and moving even in short stints to keep things moving. 

As I mentioned above, the infusions can make Mom very tired and we are seeing a substantial increase in the hours of a day that she needs rest and or sleep. That said, we are encouraging her to get out of the house here and there, or even if only for a few minutes to visit with folks AT her house in short increments to keep her mind in the space of happy presence. 

In gratitude,

October 24: Day 146

Just a quick update to let you know that we are all so very much looking forward to seeing YOU at the Shine a Light for Susan 5K tomorrow!  

The buzz of activity from the folks at Fellows has been nothing short of amazing and we cannot wait to see it all come together tomorrow. I have received several emails with questions so thought this might be an appropriate venue for a few of them:

Q. Can I still sign up?
A. YES. Sign up here or you can show up and register on site. IF you do that PLEASE BRING A CHECK. 

Q. Can I still help?
A. YES. Show up in the Fellows Parking lot around 4 and ask to be put to work!

Q. Can I donate even if I cannot come?
A. YES. Go here. 

TEAM FELLOWS IS AMAZING!!! See you all tomorrow, cannot wait to see so many of you "on the course" as I will be directing trail traffic at some point on your run. Look for me! :) 

October 14: Day 136

Hello and Happy Monday! A quick update on a few items:

1. Mom started Avastin treatments at Bliss last Friday, Oct 4. She didn't have any problems receiving the infusion and at this point, exceptional fatigue appears to be the only side effect. She will have another infusion this Friday. It is not clear to me if we'll do the same blood work we've grown accustomed to in Iowa City at this Friday's visit or if we will wait until our next visit to IC to compare/contrast notes. 

2. Oct 4 weekend our family enjoyed a weekend "away" in the swanky new cabins at Little Wall Lake near Jewell. All fourteen of us were under the same roof from Friday until Sunday, what a gift! If you're looking for a 'staycation' I highly recommend checking them out!

3. Yesterday Sarah Lewis organized grandson Carter's Football Team into a cancer awareness tribute honoring Mom. They all donned green socks, green stripes on their helmets and Carter and Mom were co-captains for their final regular season game. Carter's team made it through the season undefeated and not a single team scored against them; quite a feat!

4. We hired Professional Home Ames to deep clean my parents' house for Mom's birthday last month, and shortly thereafter they adopted Mom as one of their "Cleaning For a Reason" clients. As part of that program they will now come once a month and clean. They have been a joy to work with and I wanted to take the opportunity to give them a plug if you are looking for help with your own dust bunnies!

5. The meals continue to roll in and they continue to be such a blessing. I have been emailed asking how to get signed up to provide a meal. A huge thanks to Leslie Weible, who has graciously managed this process since Mom was diagnosed, and has contributed more than her fair share of meals (as have many of you). The link is here.    

6. My son Tyler last week co-led his school pep assembly. Parents have never been a part of such events, but his student council facilitator, Leslie Boylan was kind enough to invite Mom and me to attend. It was a pretty emotional experience for Mom, seeing Tyler in his element, and also seeing so many of her former students and friends. 

7. SHINE A LIGHT FOR SUSAN (almost) 5K run, walk, trot, hop, skip is OCTOBER 25. There is still PLENTY of time to sign up, the early tshirt deadline is all that passed. Sign ups happen here, courtesy of My Online Camp (Matt Woodworth) and this event has so many folks working tirelessly I will at a later date dedicate a full post to their acknowledgement and thanks. 

A number of you have have also emailed or texted wondering if you can show up if running isn't an option: YES! We'd love to see you and you'd be more than welcome to come, hang out and cheer folks on! 

The (Team Fellows) organizers are also still in need of some volunteers to "man the course." Sign up to volunteer HERE. A huge thanks to Jamie White for being so brave as to be our family liaison and helping to make for our family the anticipation of this event an absolute joy!

In Gratitude,