Happy Anniversary

Thank you to my children, their spouses and partner who have been so good to me.  They are always "doing what needs to be done".
Thank you to our friends and family who also "do what needs to be done".   Bringing us meals is just one example.  
It has been overwhelming to me to realize how much I am loved and cared for.  We all feel closer and have a deeper connection for which I am very grateful.

The oncologist and I decided to try Avastin every four weeks instead of three to see if there is an improvement as it can contribute to fatigue.  I am sleeping more and my right-sided weakness has increased.  This may be due to the tumour, however.

I am still enjoying:
-listening to music
-my brother's foot massages
-working on photography projects with my son
-my beautiful grandchildren Sebastian, Forrest and Maeve
-going for wheelchair walks on warm, sunny days
-looking at photos and reminiscing about adventures with family and friends
-audiobooks and Netflix

On door my 41st wedding anniversary.  We were so young and carefree 41 years ago.  The whole world was wonderful.  We had no idea then that getting married was really about what the future would bring.  We always thought it was just fun, just the two of us, but it was really about finding out about being responsible to our children and family for the rest of our lives and weathering the storms along the way.  In other words, we got better at it. 

Longer Than Expected

2015 started very well.  January was a good month.  I felt much better.  I was able to stay awake more in the day which allowed me to work on scanning my slides and enjoy listening to audio books

Since July, I have been on a half dose of Avastin every two weeks.  The frequent trips to Calgary are quite draining however.  It takes about 2 or 3 days for me to recover.  After such a good January, we have decided to try treatment every three weeks now instead of every two.  I wonder if this change will make any difference. 

Lately, I haven't been feeling as good.  Particularly since my last Avastin treatment which was two weeks ago.  I am less able.  I can only walk about 10 steps.  The wheelchair is my only way of getting around which is very frustrating.  The weakness on my left side has increased which means I am not able to do as much as I could in the past.  My right side, which is most impacted by the tumour, is also weaker than it used to be, especially from my forearm to my fingers. 

I have just completed my slide scanning project, so I am starting a new project on the computer (organizing my files and decluttering!).  But this is not going well.  I don't know if it because of the tumour progressing or if it is because of the effort and energy I need to doing something new (brain training?!).

It is hard to talk about things as it takes a lot of energy to say what I want.  I feel like I am getting worse again and yet I am not sure.  I felt so well in January and February.  For some reason I was feeling good but I am not sure now.  It feels like I am declining again even though we decided to go to every three weeks with Avastin because I was feeling good. 

So much is unknown.... 

I chose this photo of a deer who was in our backyard because in some ways it thinks it should be afraid but really, it is not afraid.

Buffalo Plaid Christmas with Papa and his grandchildren: 
 Maeve, Forrest and Sebastian

December 31, 2014

On November 21 our first granddaughter was born.  Maeve Elizabeth Petersen came to visit us from Edmonton at five days old and was a delight for me to hold.  First time parents Bronwyn and Owen were thrilled to introduce us.

I have had a couple of hospital stays this Fall.  One partial complex seizure in October, a short stay.  In November I developed vertigo and nystagmus.  There was some thought that we were underestimating the effects of the tumour, despite the stable MRI report a few days earlier. 

Di had to get the wheelchair lift, hospital bed and Lifeline installed before I could be discharged.  It was a ten day stay and my eyes were opened as to how noisy a hospital is.  I was very happy to be home.  We also have a wonderful homecare aide two days a week for respite for Di.

After some discussion at my next oncologist appointment I told my oncologist that I wished to continue with Avastin.  It seems to help me and seems to be keeping the tumour stable.  We now think I probably had benign positional vertigo, something anyone can get, especially at my age.

We had all ten of us here for Christmas, decked out in buffalo plaid onesies much of the time.  It was a busy, joyful time.

 We have Nana/Papa Tuesdays with Sarah and Forrest.  Home baked meals and goodies continue to be delivered to our door.  Our Sundre friends keep a close eye on us.  We are so fortunate.

Walking and speech continue to be a challenge.  I am declining but am surrounded by friends and family, giving me much to live for.

Up Down Upside

I have a namesake.  Forrest Harland MacKay Kenny was born September 18.   This healthy boy is a brother to Sebastian and our two grandsons bring much joy.  Their parents are Sarah and Nate.  Our second daughter and husband, Bronwyn and Owen, are expecting their first child in mid-November.  Such wonderful event.

We had a family camping trip to Kicking Horse Campground in Yoho National Park in July.  This is a place with many memories of hiking and tenting for our family.  True confession:  Di and I stayed at Cathedral Mountain Lodge and simply crossed the road to our kids' campsites for dinners and campfires.  Nice!  We visited Takkakaw Falls and canoed on Emerald Lake, both wonderful opportunities to breathe mountain air!

My brother Dave was able to get in on a cancellation at Lake O'Hara, my favourite place in the world,
at the end of July.  This was a gift from my brother and sister and was a very special time.  We reminisced, canoed and had some wheelchair adventures on the paths.

I also enjoyed visits from dear friends from childhood, private school, university and medical school.  It was wonderful to re-connect.

The most recent MRI showed that the astrocytoma looks stable.  In any case, there was no growth.  I am currently on Avastin infusions every two weeks and this has allowed me to be more stable.  The temozolomide was stopped as it did not work.  I have significant weakness, some of which could be from the dex.  We are currently tapering the dose.  As well, the anti-convulsants are being increased.

As a medical residate said to me in June, "I am on a slow incline upwards."  ;)

Not good news

From my brother:

My Dearest Family and Friends,
As I have heard from so many of you expressing your love and concern for Hal and our family, it is becoming a little overwhelming trying to respond to you all in a way I wish I could. Therefore I am giving you all a summary of my perception of the status of my brother Hal's illness. I trust that you will understand if I do not respond to individual emails as I simply cannot keep up with all of the correspondence from everyone. I have written below a brief synopsis of where he’s at right now. It is healing for me to put words to my experience on this journey, for Hal’s journey is, at least in part, my journey.

As most of you are aware, last November Hal was in Vancouver to receive the award for Alberta's Outstanding Family Physician. Three days before the award ceremony he had a seizure and a few days later came the grave diagnosis: a grade III Anaplastic Astrocytoma - an aggressive, inoperable tumor intersecting three lobes of his brain. The prognosis was grim. With no treatment, he would live an estimated three-four months; with aggressive radiation and chemotherapy, one-three years, and with a miracle, longer.

For the past six months I have traveled, at least to a degree, with Hal through the radiation, chemotherapy and steroid journey: nausea, diarrhea, itching rashes, headaches, seizures, and so little energy that putting his feet on the floor in the morning can be called success. And then there are the symptoms resulting from the tumor itself: aphasia, memory loss, and more severe headaches. The MRI about two months ago showed that the tumor was stable, meaning the chemo and radiation had stopped its growth. This was good news at the time and beyond what was originally expected for that point in his treatment.

In the past two weeks, however, Hal has had symptoms of weakness in the right side of his body, which are going beyond the side effects of the chemotherapy. His most recent MRI this week did not present us with good news. It showed that the tumor is again growing, which means that he is no longer responding to the chemo. His alternative now is to try a drug called Avistan, which, I understand, is still in the experimental stage in the treatment of brain tumors. It is not chemotherapy (in that it is not meant to break down tumors) but instead somehow attacks the blood vessels of the tumor, preventing it from growing. While very costly, he is going to try four treatments. Apparently 20% of brain tumor patients of his type respond positively to this approach, so we are expecting good things and will know by the end of the summer if Avistan will help him.

Hal is settling in to the reality of his situation. He is handling the whole thing with grace and courage, as he has done so the entire past seven months. In addition to his amazing wife, Dianne, Hal’s wonderful children are also giving him strength on this journey. Sarah and Nate are expecting their second child in September and Brody has been working on photo projects with Hal.  Bronwyn is expecting her first child and due to give birth in November. Bronwyn and Owen have so wanted a baby for some time. Hal’s goal now is to live long enough to his see this grandchild. If he lives longer, he will gratefully accept the gift.

On behalf of our family, I thank you for your love, your patience, and your prayers during these most challenging and difficult times. This whole experience has shown how hugely unjust and unfair that a person of Hal’s character and stature would have to bear this kind of hell during the last months of his life. It is awful that a person who has given so much of their life to others is faced with such anguish in the last chapter of their own life. In the midst of my grief, one spark of solace in this experience is to witness how all that Hal has given to others is coming back to him - from the community that cherishes him. The love that has so freely flowed through him in his life and in his work as a healer in his community now surrounds him. As I observe this I am inspired. May we each know such love that returns to us from others through service to others.

As a student on this journey with Hal, one of my lessons is to embrace uncertainty as a part of life (for a longer list of some of my other learnings, see: http://conta.cc/1lWwUPj )
Uncertainty has been an essential ingredient in this whole experience. My willingness to accept this has enabled me to find a degree of peace, as I learn to be more fully present to what surrounds me now, rather than to indulge in my fears about the future. The more uncertain things seem to be, the more security I am discovering. One of Hal's challenges, over the remaining time of his life, as he embraces the reality of his impending death, will be not to let the prospect of dying get in the way of fully living the time he has left. Perhaps this is a challenge we all face.

With love,

Dave

Dexamethazone

Dexamethazone.  I've been on at least a medium dose since November.  Any lower dose I have trouble.  I really wasn't having any side effects.  I started wearing sweat pants in mid-March as they were more comfortable.  I'm down ten pounds but I need to buy new pants for brother-in-law's wedding.  Turns out my waist size has increased four inches.  Dexamethazone.

I have had weakness with right my hand and foot which has come on since last month.  My next MRI is tomorrow and next oncology appointment is Tuesday so hopefully will get some insight as to what is causing this.

Hoping for the best,
Hal

Spring Sprint

The Brain Tumour Foundation of Canada held their annual Spring Sprint fundraiser in sixteen cities across Canada recently.  The walk or fun-run aims to raise funds to transform the future for brain tumour patients and families.  Thanks to the efforts of our three children, Sarah, Bronwyn and Brody, we participated in both Team Hal Edmonton May 31 and Team Hal Calgary June 8.  The t-shirts said "Hal's Angels"!  Both events had gorgeous weather and were a celebration with family, friends and colleagues in support of Hal.  We were overwhelmed and so grateful.  It was the best thing for our family as it made us part of the bigger picture.  It continues to boggle the mind that 27 Canadians are diagnosed every day with brain tumours.

We are happy to announce there are two baby bumps in our family.  Sarah and Nathan are due September 26 with a sibling for Sebastian.  Bronwyn and Owen are due November 16 with their first child.

I had a great time sorting hundreds of my Dad's slides with my brother Dave and sister Kate.  It was a walk down memory lane with my sibs and we had lots of laughs.

I have an MRI June 21 then begin my 5th round of adjuvant chemo June 24.  I anticipate taking the full dose of Temozolomide this time as this dose at 75% has gone quite well.  Fatigue and weakness continue to be daily challenges.  Most days I am able to do some walking and enjoy the sunshine.

Some of Team Hal Calgary