Thursday, March 19, 2020

Celebration of Life

Family and Friends,

Most of you have likely heard that Heather passed away on March 7, finally ending her nearly decade long battle with cancer.  Heather passed away peacefully in our home, surrounded by her entire family.  Myself, and family members, have received an outpouring of support from Carnation Nation, family, friends, and the community. I am so grateful to know that there are so many standing behind us and ready to help when needed. My apologies if I have not responded to your outreach. 

The death of a spouse, a mother, a daughter, a sister, a true friend, and such a bright light brings a great amount of grief, uncertainty, and questions for the future that just possibly cannot be answered.  We all live in an uncertain time right now with this real potential for great sickness sweeping over the world. 

I have envisioned a large celebration of life for our wonderful Heather and will reach out to some of you to to ask for help in completing this vision and bringing it to fruition.  Ideally, the details of this event would already be known and people could begin to make their own arrangements to attend. Sadly, this is not the case.  The state of the world has delayed this important celebration for the near future.  I want all of you to rest assured that we will gather to celebrate the light and beauty of Heather, and I will keep you all informed as things become more reliable. Thank you all so much.

Graciously,

Ian, Azalea, and Eleanor


                         "The place of true healing is a fierce place. It’s a giant place. It’s a place of monstrous                                       beauty and endless dark and glimmering light. And you have to work really, really, really                               hard to get there, but you can do it.”           

                         --Cheryl Strayed

Tuesday, February 11, 2020

Sadly...

I cannot write like Heather, and there is no way that my voice could ever do this chronicle justice.   Heather is a true wordsmith and for the last 10 years has shared with us her gift of writing and the unique ability to make the science of her disease and treatments understandable; overshadowing the darkness and ultimate mortality of cancer.   

Unfortunately Heather is unable to write any more blog posts.  On December 23rd, we took the whole family to Iowa City for a regular appointment with the the radiologist and to meet a new oncologist to complete the UIHC team. Sadly, we learned that Heather's cancer had spread to her cerebral spinal fluid, manifesting now as leptomeningeal disease; a condition with a very grim prognosis.  

We carried on to Amish country later that day to complete some Christmas shopping, have a family style meal at our favorite Amish restaurant, and bring home a rhubarb pie for our own Christmas.   

Many amazing doctors have helped Heather to live the best life she could this past decade, giving us time to have amazing experiences and make memories as a family so the girls may be able to remember their mother. Amazingly, Heather has been able to create these  memories with all of us for far longer than the statistics would have predicted. 

Currently, she is at home under hospice care and surrounded by family. Headaches that have plagued her for years are now being managed by stronger medication.  She is as comfortable as possible.  Unfortunately short-term memory loss has been progressing quickly and Heather does not have a good ability to create new memories at this point. However, she still has her long-term memory and ability to reminisce, her quick wit, and sense of humor. 

Heather does not have much longer to be here with us, but our family and friends are treasuring each and every moment we have left together. We couldn't possibly ask the powerful carnation nation for anything more, other than to keep our daughters, and Heather's loved ones in your thoughts. 

At this time we are asking for any close friends that might want to visit to coordinate with me. However, cards and letters would be more appreciated and better remembered by Heather.

Thank you for everything you have done for Heather and our family. 

Very Graciously, 

Ian Allen

Monday, December 16, 2019

boomerang again

I'm not sure what triggered the following chain of events.
But I must have been glitching in some significant way because my watchful sister called me in, and my marching orders were to turn myself in to the ER.  After some imaging the hypothesis was that my shunt was clogged, so ambulance ride to Iowa City, for another brain surgery. to resolve the clog.
Thanks dad for doing the research and telling me what it's called Third ventriculostomy.  Before this procedure I was having terrible headaches now I barely have a mild daily headache.

I started out in my own room in the neurosurgery ICU but then I was moved to a lesser floor where I acquired a roommate My roommate was an ancient woman named Lucy.  Patients like Lucy and I are labeled fall risk and are not allowed to get out of bed without assistance, this makes timing bathroom trips very tricky.And Lucy provided some entertainment one night.  Poor thing needed help with something but either couldn't find or couldn't operate her call light. So she started throwing items from her tray table toward the door.  This included various cutlery from her dinner tray.  i used my call light to summon some assistance for lucy. THe nurses were suprised by the litter in our room.

But I suspect that help arrived too late for Lucy because soon I could smell the cause of her crisis.

I don't know the timeline but after being in the hospital for a relatively short amount of time I was discharged to Acute Rehab in my hometown.

Needless  to say I would have completely missed the Thanksgiving holiday if not for my bff Rose visiting from Massachusetts and hanging out with me in Acute Rehab. and playing Rumicube with me.  Thanks Rose, you're the best!!!!and thank you also for the new bluetooth speaker. 

The first thing I did when I got home was to use the bathroom without first asking permission and without being watched.  It was glorious.  Simple things. 


Monday, November 11, 2019

my Halloween was all tricks no treats

A few days before Halloween I completely weaned off the steroids, but then the withdrawl symptoms kicked in: nausea, chills, and at one of my ordinary appointments with Dr. Oncologist she caught me with a fever of 100.7  She claimed that fevers are not a normal part of the dexamethasone withdrawl symptoms, so she admitted me to the hospital with a fever of unknown origin; I had a chest x-ray and a Ct scan to explore whether or not I had an infection lurking in my body.  I did not.  I almost had an MRI, too, but Bob from transport saved me from it by being the first person to ask me if I had any metal or shunts in my body.  I said why yes Bob (I have a ventricle shunt that needs to be reset after an MRI). So instead of tranporting me down to MRI he left my room to bring the shunt news to the doctors on my behalf.  I heart Bob from transport!

I did have an MRI in Iowa City recently, which suggested that Neil is dead, and Lloyd's shoreline is angry/inflamed.

Wednesday, October 23, 2019

muscle difficulties

I accidentally overdid my upper body physical therapy last week.  My left arm is currently a cooked noodle; I can't raise it up.  I have DOMS (delayed onset muscle soreness), in my left rotator cuff apparently.  Fortunately I use my cane with my right hand, so it's only been a minor inconvenience.  And just a bit painful.  Sister Holly massaged it for me, and that helped a lot. 

In the house now I primarily use a cane rather than a walker.  For walks around the neighborhood I still prefer to use the walker for now because there are lots of sticks and other tripping hazards.

I'm down to 1 mg of dexamethasone per day.  Feeling fine, eating fine.  On Sunday I will start zero mgs of dex.

What other story lines do I have for updates?  I turn 39 years old tomorrow!  I feel so lucky to have made it to 39.  When I was diagnosed with inflammatory breast cancer in October 2010, the 5- year survival rate was only 50%.  I'm old!  My goal has always been to make it at least to 40; I'm close! Lloyd is trying to keep me from 40, but just maybe I'll make it after all.     

Friday, October 11, 2019

Great strides

Sorry it's been so long.  I've been elecronically challenged--not wanting to deal with electronics.  That's my poor excuse for any concern I may have caused you in my blog absence.

And there have been a few shenanigans, including ANOTHER ambulance ride to Iowa City (with the same paramedics, who remembered me although I didn't remember them).  So what was this ambulance ride about?  Well, I can't tell you precisely what dose of steroids I was on after the ventricle shunt surgery, but it was quite a bit.  Maybe 8 mg per day or something in that ball park?  My spouse was managing  my dose for me because I was in no condition to manage my own meds.
As per doctor's orders, we stepped down the dose on a schedule.  Well, as soon as we tried to step down the steroid dose, I stopped being able to keep food down.  I was puking on my plate during dinner!  It was terrible, and horrifying for the children.  So, we called Dr. Oncologist.  She said to go to the ER and get checked out.  So we did.  And many images were taken (they have a specific phrase for this bundle of images, called a shunt-o-gram) to make sure that my shunt wasn't awry...my local ER wondered if my shunt was working too well, so hence the ambulance ride to Iowa City, where the shunt experts are.  (Although steroid withdrawl seemed to me the simplest explanation for the puking.)  The shunt experts concluded that my shunt was in perfect order and steroid withdrawl must be the cause of my nausea.  Huzzah for no problems with the shunt.  So--they upped my steroid dose for no medical reason other than Comfort, which counts for something in my book.  Now I'm on 3 mgs per day until Sunday, when I'll try to go down to 2 mgs per day.  And we're going to do an early morning blood draw to check on my body's ability to make cortisol after I wean completely off the roids.  Data!  :)

Other than these shenanigans, I'm doing quite awesomely.  Slowly getting my balance back with a bit of leg strength, I still have a physical therapist and an occupational therapist coming to my house twice each per week.  I made granola with my OT this week.  We have a low counter in our kitchen, so I can sit in a desk chair and do stuff at the low counter without anyone worrying about me falling over.  I still don't do any chopping, though, because I'm on a blood thinner and so really can't get cut right now.  I'm on the blood thinner for a blood clot in my leg that was discovered when I was hospitalized for shunt surgery.  My leg had swollen up like a club! So someone did an ultrasound of my leg while I was under I guess.  I have a clot in a femoral blood vessel = blood thinners.

Another thing I can do is cook using my Instapot!  I don't feel safe running the stove yet (because balance checks! I still need two hands on the walker.) But I can cook in my instapot.  Yesterday I made minestrone (recipe here) and it was wonderful.  I have a bladeless chopping device to ensure no injuries to myself.
 
Image result for oxo food chopper
I feel as though my biggest challenge as yet is getting back on top of  my cognitive game.  Everyone says I'm getting better, so I'm moving in the right direction.  But I still struggle when there's more than one thing going on, and it exhausts me.  So I continue to be patient with the mysteries of brain healing.  I finished an afghan and am starting another one this week.  I've read several books.  I play cards with the girls when they're home from school.  But my favorite part of the day is definitely my lunch buddy--someone has continued to organize lunch buddies for me even though I don't acutely need a lunch buddy.  That is, I can get my own lunch.  But I appreciate and love the company!  And my lunch buddy will often take me outside for a walk, which is a marvelous bonus for me!