From: Timko, Terry M
Sent: Tuesday, July 19, 2016 2:09 PM
Subject: Maura Update - ridiculousness & 1/2 way point of initial treatment! - Tuesday July 19th

Dear Friends and Family,

Sorry it has been 3 weeks since the last update and for the length of this one.  Writing these is getting harder, but cathartic as well.   I hope you don’t mind how this one rambles on, in addition to keeping you all updated, I think I’m using these as a way to process out loud and capture the steps in our journey.

Before I get started I wanted to personally thank all of you who are supporting us in so many ways: through prayer and worship, driving and meals, parenting our children in our absence, valuable clinical input and guidance, wise counsel encouragement and insight, generous financial gifts, thoughtful cancer research, car buying help for the boys, finding a place for us to stay in NYC and Daniel in Rochester, getting me out of the house for an hour or 2, … the list goes on.  We are blown away. You are Amazing!

Ok so this chapter is a flurry of activity starting with the amazing and ridiculous, progressing to just shear busyness and if I’m honest losing of sight of the big picture a bit in all the dust that is being kicked up. There is so much to do and time is so short.  “I feel thin... stretched. Like butter scraped over too much bread.”  We are both getting tiered, her from radiation and disease fighting and me from juggling and playing catch up.

As the subject hints at today she has her 15th of 30 doses of radiation and we are still doing really well mentally, emotionally, spiritually and relationally.  But I must say I am becoming numb and things are starting to blur.  This is something I need to deal with to best support her.

The doctors say she is tolerating her treatments (radiation, chemo & immunotherapy) really well.  She has headaches, some dizziness and is very tiered (like should have 2-3 naps a day tiered). She has lost her hair and we are in the market for cute hats :).  Her speech is still labored but improving, I suspect she is rerouting those neural pathways which is how this happens, but her cognition continues to deteriorate – especially when needing sleep.  All this is expected with the treatments and sleep helps her brain heal from the radiation.

As I’ve said previously we won’t know the efficacy of the treatment until the 18^th of August with her next MRI which comes after she stops chemo and radiation.  This is because effective treatment response will cause inflammation in the brain which mimics tumor growth on an MRI (called pseudoprogression).  If the standard treatments (chemo & radiation) are effective we should expect her symptoms to abate some within a couple weeks after the treatments end.  The clinical trial treatment (immunotherapy) will continue indefinably every 2 weeks in NYC and hopefully keep the tumors at bay, but also may cause inflammation and other adverse autoimmune responses. If the disease progresses we will find the next tool to fight it with.  There is an amazing amount of research in this area – truly stunning.

Logistics:

We got into the American Cancer Society Hope Lodge (132 W 32nd St, New York, NY 10001).  I believe one of you put in a good word for us (you know who you are) because we were told there was no way we would get in initially.  This is huge because it is designed for cancer patients and we will only have 4 weeks of NYC hotels vs. 8.  Ethan spent the week with his mom & I last week and Josh will spend the week with us next week.  We are trying to let them have some quality time with mom, make memories and process through this with us 1on1 since we are essentially not home for 8 weeks.  Ethan did spend a bit of his mom’s nap time chasing Pokémon via Citi Bike.  I’m working from the NYC HP office Tue-Thur, which is nice.

I’m actually in Cincinnati this week taking care of things we have neglected for a couple of months and Maura’s friend Ginger, who is a nurse, is with her in NYC.

A couple of Maura’s relatives have visited Maura’s mom Lois who we care for and is now in assisted living.  This was greatly appreciated, as Maura is more worried about her boys and her mom than she is about herself.  So any Mulanes or Harbottles who want to do a trip to Cincinnati to visit aunt Lois and see Maura you are more than welcome.

While visits from friends when we are home can be life giving, they can also be very draining on Maura.  Please work with me if you want to see Maura.  I’m trying to let 3 or 4 new people visit briefly on weekends she is home.  This coming weekend is already full.

I expect we will have driving needs for Ethan next week but do not need any meals for the next 2 weeks. The boys are still working off what is in the freezer.  Please continue to see the web site (https://my.lotsahelpinghands.com/community/timko-love) or contact Janet and Jeff if you want to help out(Arnaldo is filling in for Jeff while he is on vacation).  All 3 are cced.  The boys really appreciated the gift cards.  If you dropped off a meal, your container is likely in the bags in our foyer.  Feel free to stop by, let yourself in and pick up your containers.

The last logistical item is Maura has declared email bankruptcy on her Hotmail account w/ 1000s of unread messages.  We have set up a new gmail {contact info deleted} account for her which she is now getting on her phone.  Feel free to email her (ccing me) if you want to send her a message.  She is not much into responding yet but is doing a little bit of email from NYC.  She does not have her computer w/ her.

On to the ridiculousness:

We are doing better emotionally, spiritually and relationally than we were before this started.  We are closer to our God and our faith in, and understanding of, Him has deepened.  Our prayer is really that this would continue, as what could be better than that?  It is hard with all the busyness.  Maura and I are also closer and more in sync too, if that is possible.

The 1^st 2 weeks in NYC while Maura was relatively asymptomatic were an amazing time for us as a couple.  Not only did we get to explore one of the most amazing cities in the world, we got a 2 weeks together which has not happen in nearly 25 years of marriage.  We kayaked on the Hudson (yea that’s a thing)…

… got to know our new neighborhood and learn to live like New Yorkers.  We walked the High Line, checked out the Met and ate really well.  We also talked about life, death, suffering, the future, our children, work, God, money and our community.  We looked at our lives and found few if an real regrets (one was that we never lived in NYC before we had kids. Ha!).  I definitely have a different view of our retirement savings and plan to treasure every moment we have.  I know if God does not heal her here in this life we will all miss her terribly. 

I have had some amazing conversations with our extended community, from several who have lost loved ones to glioblastoma, to old college friends, to our boys and closest friends.  Nothing like life and death to chase away trivialities and make time to get the meat of life in our conversations and relationships.  We pray this also continues.

This season is both affirming our life choices and perspective while at the same time transforming them.  The reality is we still don’t know if Maura has 3 months or 3 years and we don’t know the quality of that life or what it will require of us.   I’ve spoken to people whose loved ones were disease free, with a clean MRI, who died a month later.  This reality makes you look at your time, habits, relationships, surroundings and money through a different set of lenses.  I know Maura & I lived intentional lives before, but I feel like blinders have been removed and we are now seeing these things, life, as it really is.  We are learning a lot from this and looking forward to sharing with you all as we can.  We are also really looking forward to starting that couples group we spoke of to many of you in a few months.

That is about it for this installment.  I hope to get the next one out in a week or two, not three, be a bit shorter and share in a little more depth what we are taking away from this experience.

                                                                                                                                           

With Much Love, Terry & Maura