Medical Update 8.10.19

Since my last post here, I have been all over the map with medical treatment and battles with Afib.

I simply don’t tolerate medicines very well.

The Afib has stopped for now. The new cancer medication had side effects that were unacceptable to me.

Along with my oncologist(s), I have decided to stop all cancer treatment.

This was not a hard decision me because I am not me right now.

Thanks again for the thoughts and prayers!

Quick Update 6.13.30

I returned Tuesday night after 10 days of radiation in NYC to my back and skull to try and shrink my tumors which impaired my vision and balance.

On Thursday I ended up in the ER with arrhythmia and was admitted to the hospital. I was discharged home yesterday afternoon. Trying to control heart with meds.

I’m sorry I could not respond to everyone but I was busy….

My plan is to transfer my care to Greensboro and hope for no new events…

My treatment will include one more medication that has a 50/50 chance of slowing the cancer- of course I have to fight insurance to be approved.

Again, I appreciate the thoughts, encouragement and prayers!

Update 6.7.20- thoughts on Sunday

I started this blog as an outlet for coping with/expressing my emotions while I fought cancer. I needed to express myself and serve others by detailing the struggle, volunteering valuable education, real world/real time experience and inspiration -I hoped others could relate it in handling their own struggles.

I am constantly learning and refining my thoughts.

II’ve observed, listened and spent many hours in reflection hoping to take a big, negative, overwhelming event and find something good and positive in all of it.

For what it’s worth, I found my voice.

I hope I’ve made you think, laugh and cry and reflect on what is most important to you.

This time has clarified some very essential elements for me:

Choice- we always have a choice, make good ones

Hope- hope sustains us at all times

Kindness- Costs nothing to bestow and ripples thru those around us only to be returned in ways we never expect.

I hope to be able to share a little more when I get home.

Medical Update 5.30.20

Due to the pandemic my treatment in NYC has been delayed about 3 months and we finally decided that I needed to make the trip regardless of the covid risk. Since it is a clinical trial, I did not have another option outside of NYC without potentially longer delays. I flew a circuitous route to the city on 5.28.20.

I was having a rough few weeks preceding the trip, losing some visual acuities and suffering dizziness and balance issues along with crippling pain in my spine and hips.

I was anxious to get checked out.

A series of covid delayed events kept delaying local interim scans and blood work so I was flying blind in a manner of speaking.

My gut was telling me something.

On the morning of the 28th I did not feel good about boarding an airplane or navigating my connection but I asked my brother to drive me to the airport and boarded my flight with apprehension.

By the time I reached my gate in NYC I was asking for a wheelchair to get me to the cab stand.

I did manage to check into my hotel but something was nagging me but I convinced my self I could make it until the morning.

Bear with me, I do have a point here.

After an unsuccessful attempt to nap I ended up in the urgent care at MSKCC (my primary hospital) and I presented with a fever which started a covid protocol and was promptly tested and isolated. To these medical professionals credit, the work up on me never stopped.

I was covid negative which did speed things up.

Morphine stopped the screaming pain and I was able to relax thru all the commotion.

At 2:43AM, the resident on duty informed me that I had a mass in my brain it was the likely culprit for my visual and balance issues.

I was surprised but not stunned- a January 17th brain CT showed nothing but I had sensed something for a while.

As I was processing all of this, they began prepping me for surgery- paperwork and physically- there was a neurosurgery team coming to meet me. They were waiting on the results of one final MRI scan and a consult with the radiation oncologist.

At this point I was alert enough to ask “why the urgency?”.

The answer was that the mass had a bloody halo around it and the fear was the bleeding would worsen increasing the pressure/problems.

I swear there is a very important point and an ending here… be patient!

Thru my morphine haze I recalled a conversation from 3 years ago with my Oncologist where we discussed metastasis of my cancer to my organs. He informed me that usually that was not the case except with very late stage events. Plus we discussed the mets in my skull specifically and he warned me that it was far more likely to have issues with a bone tumor pushing on the brain than actually penetrating the tissue. So I asked the question of the resident in charge which pumped the breaks.

The result was an order for another detailed MRI of the brain- which was completed early this morning.

Mercifully I am coming to the close….hang on…

In summary, it appears the tumor is not in the brain tissue, it is in the bone and can be treated with targeted radiation, not whole- brain radiation, or surgery (both of which have greater potential for complications).

True to form, a team, led by a radiation oncologist, is currently mapping treatment plans for radiation to my spine and my skull- we have been communicating regularly around the clock and I start treatment Tuesday for 5 days of radiation. Steroids and morphine have reduced the swelling and pain to buy me these next two days. As long as there are no “events” I will be here thru June 8th or 9th.

Finished! Ta Da! my points are:

1. Listen to your gut/body

2. Don’t try to be cowboy- ask for help

3. Take control of your medical and challenge advice/opinions that appear incongruent or just plain wrong.

4. Pick your medical team and trust your team- and every team has to have a coach and a damn good one- mine is excellent.

Special thanks to my long standing friend (it actually autocorrected to fiend- hmm Siri is a sneaky girl) and Davidson classmate Dave Lennox and his wife Leslie for coming to my aid yesterday and rescuing my worldly belongings and checking me out of my hotel. You guys saved me a lot of useless anxiety.

So, I’m not sure exactly what lies ahead- I have been warned that it may worsen before it gets better but I will continue to fight on.

It is Saturday morning and if you have a spare prayer lying around, I could use it about now.

As usual I have received a lot of lovely thoughts and notes- Thank you and Love to all!

Medical Update 3.4.2020

Thanks for the messages, I am a little tardy with this update…

My medical oncologist, radiation oncologist and my neurologist are in agreement that my headaches are not being caused by the tumors in my skull and the risks associated with radiating the brain are not worth the potential benefits at this stage.

I completed my fourth course of treatment in the clinical trial on Friday and so far, so good.

My interim scans show that my lymph nodes have shrunk and there appears to be no progression of the bone tumors.

My marker is my PSA and it is fluctuating which is puzzling but not too alarming at this point.

Again, thank you all for the thoughts and prayers! I will continue to fight with all I’ve got!

Medical Udate 1.26.2020

I recently completed the 3rd cycle (of 6 planned) in my clinical trial.

My progress is mixed and recurrent headaches prompted the doctor to order a brain scan.

The scan showed all the squirrels were in their cages but I have several tumors in my skull on the sides and at the base. The tumors have reached a size where they have started to cause mild swelling of the brain.

I am working to schedule appointments with my radiation oncologist to see if the spots can be safely zapped by external radiation.

A piece of good news is that the testing of my cancer genes shows a lack of a certain marker which should make me a candidate for a new class of drugs that is expected to be approved by the FDA by year end.

As always, thanks for the kind messages and prayers!

Silent Night

Penned in 1818, this is my all-time favorite Christmas carol. The Silent Night is a time to celebrate the birth of our Savior and a time to stop and take stock of our blessings.

As a child, it was a time for presents- evidenced by gifts left by Santa. As an adult, it is a time for reflection and remembrance of those who have left us and a time to honor those who remain central to our lives.

Those of us touched by cancer or chronic disease have a different perspective on life; it is unavoidable.

We mourn friends we’ve lost along our journey and we welcome new friends who walk beside us. We can’t afford to overthink everything; we must trust in others to move forward and sustain hope.

Hope is central to survival.

Little gestures take on great meaning and seemingly random events become puzzle pieces which slowly mesh to reveal something far bigger and brighter for the future.

I am thankful for my friends, new and old and my family and for all the kind words shared throughout this year.

I wish you all a Merry Christmas and many blessings in 2020!!

Just a few thoughts heading into Thanksgiving…

Some years back I read a book written by Bill Shore which profoundly influenced my thinking. The title is “The Cathedral Within: Transforming Your Life by Giving Something Back”. If you have not read it, I highly recommend it.

Although the book inspired me, life got in the way and, like every good procrastinator, I made half-hearted attempts at action.

I began writing this blog as a way of coping with a life changing cancer diagnosis- specifically I wanted to share my story to educate and inform others and share some personal experiences that shaped me and honor the people I love.

Said more simply, I wanted to do something positive in the service of others.

You know- leave the world a better place than I found it.

Along the way I discovered I needed a little work on my spirituality. More specifically, I wanted to be able to express its importance in sustaining me in my journey.

My writing has been interrupted by the effects of my treatment but as my mind has cleared, so have some of my thoughts and I want to share a few of them.

Recent events have moved me in a healing way- healing as in my spirit- I leave the physical issues to the doctors. I do as I’m told and go on about my life as best I can- I am what they label as “treatment compliant”- not sure why I find that amusing- but I do.

The most important thing I would like to share with everyone is this:

It is God’s timing as to when and how I leave this world- it was true on the day I was born and nothing changed on the day I learned I had incurable cancer.

It was always beyond my control and will remain so.

I work to keep my heart and mind open to a miracle while focusing on trying to help others in ways that I can.

I refuse to be consumed by my disease.

Almost daily I learn of friends and family of friends who are facing devastating illnesses and I have learned that by sharing our journeys and our fears we make each other stronger.

One thing has been made crystal clear to me over the last four plus years and it is that there are no coincidences- things happen and people enter our lives for a reason. We may not know the reason immediately but eventually it becomes clear.

I met an impressive young man, sitting on a porch, smoking cigars (yeah I know, no need for comment). Our conversation drifted to his occupation and, since I’m nosy by nature, I started asking questions.

He was clearly a man with a mission and had passion and conviction for his work.

Our connection was immediate.

He is the Executive Director of Freedom House, a Greensboro, NC based non-profit.

In a nutshell, Freedom House serves women who struggle with addiction and their children and it is Christian based.

The program is unique in its structure, their success rate far exceeds the norm.

If you follow my blog, you know I have struggled with addiction since I was a teen.

I know what broken, hopeless and helpless feels like.

Freedom House’s beliefs, mission and message align with mine better than I could ever hope for.

A light switched on in my heart and soul.

I was intrigued and have since met the founder and another leader in the organization, visited their new campus and offered to volunteer my time and financial support.

As long as they will have me, I’ve chosen a way to give back- to do my part in building the cathedral.

If you want to be inspired visit http://www.helpfreedomhouse.org and listen to Ann’s message.

I will be traveling on Thanksgiving for a check up but that’s OK, I have already had a wonderful Thanksgiving.

Who I Am Today

Not so long ago I swiped an Instagram post (my bad) without proper attribution so here it is:

The post was especially timely and meaningful to me.

Somehow I’ve managed to find my feet after each stage of my treatment but the recovery from my last chemo has proven challenging. Somewhere depression crept into my world and it has been a tough battle. My mind wouldn’t work properly.

I’ve mentioned the PM’s I receive and some of them are so beautifully written that I encourage the writers to be more public- I haven’t had the success I’d hoped for….. The messages are poignant, life affirming and show the wisdom we have earned.

God knows our world could use a huge dose of wisdom and plain old common sense.

I have reconnected with many college mates thru FB and this blog. Their messages are enlightening, kind and show deep thinking. I responded to a thoughtful and encouraging message from a friend the other day telling her that it is a shame it took a life changing event for me to find my feet, my voice and define how I really want to live.

To paraphrase something I heard recently:

“You are the person you are today, not the person that you were yesterday or any day in the past.”

To which I would add:

“Forgive yourself and remember that you have choices, new choices, every day- so choose wisely”.

The last few months, going thru chemo and trying to recover, have made it difficult for me to think clearly and to some extent, feel anything- high or low. Very frustrating. I survived by surrounding myself with the people I care about and focusing on doing  something to better other people’s lives.

This is who I am today.

My goals are very short term and specific.

As I enter a clinical trial for another phase of my cancer treatment, I am praying the cognitive issues will continue to resolve and I can get back to my life. I will follow the protocols and hope for the best but my goals have nothing to do with treatment, they have everything to do with survival to experience some very important milestones.

What you may not know about me is that in addition to my son, I have several other “children” who I love dearly and are very important to me- not actually children- but young adults. They are all experiencing milestones in their lives and I need to participate. One couple welcomed a son in June, another will welcome a son in a few days and my “Spirit Daughter” (she doesn’t like the label) will graduate college in December. My son continues to thrive in his career.

I have held Harry; I will hold William and I will see my “daughter” receive her diploma.

I could not feel more blessed than I do today!

 

 

Medical Update 10.26.19

I cleared the hurdles to get into the clinical trial and was randomized to the study group (I am receiving the new medicine).

Actually received the first treatment yesterday and, knock on wood, all is good today.

1 down, hopefully 5 to go!

Prayers answered, challenge accepted- here we go!