The Life I Dreamed Of Then...

April 17th 2020 I found myself in Bangor checking in to the Cancer Clinic, the biopsy that I had resisted having, had come back positive, not only that I was dealing with the largest tumor that the Dr who performed this biopsy had ever seen in his 25 years of hospital practice.

The Life I am living Now

I left that house that morning not realizing that I was still wearing my slippers. I had called ahead and asked them to have a wheelchair to meet me once my dearest most beautiful kindest friend Linda dropped me at the clinic.

At this moment in time I was so weak I could not manage to be on my feet for more than a few minutes at a time and I knew I was not going to be able to make it from one room to the next, much and all as I disliked not being able to do it – that was the reality.

That reality found me a few nights earlier, sitting on my couch choosing between heading to the kitchen or heading to the bathroom, conserving energy.

When systems collapse, they often implode inwards and altitude is lost at a rapid speed. It is like standing at the edge of a cliff viewing the cliff wall disintegrate around you as you are busy struggling to get to safer ground you have forgotten to call for help.

I had been treating this with a Dr in NYC for about 6 months, once Covid hit I was unable to travel to treatments as travel between states was no longer allowed and flights were canceled and the city shut down.

I did not qualify for health insurance as I was working two jobs part time with the insufficient hour requirement at either to qualify for workplace insurance.  I made too much money to qualify for Obamacare style insurance but not enough to be able to afford private insurance which was around $800 per month I think at the time. 

Covid and the restrictions around it put a nosedive spin on my health that I had not experienced before ever.  Just a year earlier I ran my fastest ½ marathon time ever.  I also had had two earlier brushes with cancer from when I was 25 and also about 5 years before this that I had been able to address so my reasoning for not taking a standardized western approach was not without some consideration.

Being a single parent meant a lot of the structure families usually have was not in place. Fortunately I had some very good friends who filled that space – Linda who was my by-my-side Angel.  They were not without their voiced concerns. Shorey and Glen specifically come to mind on the cautionary insistence that I seek further help and my dear friend AnnRae had traveled to be with me earlier in this journey. Talia and Mark for stepping and caring for my daughter while I was in hospital.  And then later on the recovery so many from my place of work filled in the blanks for me – Edwina, Bonnie, Herschel, Monica, & Marci and hundreds of others who supported my via Go Fund Me organized by my dear friends Robbie and Roisin, my humbled support from Harrison, my brother John and my friend Don and all my family once I was on the ground back in Ireland. When Covid hit, travel between Ireland and the US was halted preventing other family members from coming to assist me from Ireland.  

Ailish Journey

Are you good with God?, I was asked the evening before I headed to the hospital.  I am, I have always been good with God, was part of my usual thought process, God is good with me too I am pretty sure.

“We will be keeping you overnight, it is not due to the cancer, your kidney function is about 20% and your calcium is extremely high. It looks like you may be headed for a cardiac arrest in the next 24-48 hours.” I looked down at my slippers, thinking it must be a bad omen to leave your house wearing slippers, something I considered I must not do again.

The Drs in the Bangor Hospital were amazing, they did everything in their power to make sure my vitals normalized and to keep me alive.  It was fascinating for me to see the compartmentalization of body systems as the kidney doctor, and the heart doctor all worked around each other with medication and fluid optimization to get things back to normal. Their goal was to get my systems back to normal function, get me on my feet and they spoke of recovery.

The team at the Bangor Cancer Clinic – they mainly focused on my death and when it would happen.  By the time I came round fully to their diagnosis I was already a month into my 2-6 months to live sentence.  

The doctors in rehab took my recovery seriously and I was again blessed with nurses and doctors that listened to what I was working with – no I did not want opioids to be severed from the pain and my brain, but yes nerve painkillers that would help the local pain and Tylenol for wound dressing was amazing and helpful.  Then there was the nightingale nurse who came one night to sing me a song.  We had conversations about life, death and loved ones that had passed.

My first round of chemo went well – it was like a magic eraser when it worked it was amazing.  It was also a fun experience.  I was so mentally ready for it, serious, focused and concentrating.  It was being administered in my hospital bed, and I was about 10 minutes into it, when my friend Glen, Bonnie’s husband walked into the room with flowers.  From that moment, the serious deathly focus turned from me to what was a more immediate problem, water for the flowers so they would not die and locating a vase.  It was all a matter of perspective I realized and here I was thinking chemotherapy was like critical surgery and an operating room. 

The second time I took chemo – within seconds I turned bright red, my breathing labored as my body was having an allergic response, I pushed the button and an alarm went off and nurses rushed around. I had finally discovered the first thing in my life that I was allergic to.

My third round of chemo went ok – it was a different brand, nothing dramatic to report. It worked well for me for about a month and then it stopped working.  The cancer care clinic was very organized, shockingly so, it felt more like a conveyor belt, you drive down, get the bloods done first, then wait for results which was quick, then you go upstairs and you receive your treatment in a comfy lounge chair with curtains around it and then you go home.  On your way out the door, you get a report of everything to take home with you.

The fourth type which was oral tablets daily was really the first one that made me nauseous, that also worked for about a month and then stopped working, cumulative sickness.  When that stopped working – by now we are in July sometime, they were out of options.  Surgery was not an option as it had spread, radiation was not an option as the area was too broad and non specific.

Ailish File

The support system and people who came to help me once I got home were so helpful and kind. Debbie my home nurse, was a bright light that came in a few times during the week. Dr. Kowalski and others in the Millinocket Hospital gave all their best efforts to help me along the way.  The physical therapist one day working on my shoulder which was somewhat frozen at this point suggested that I go to the Dana Farber Clinic in Boston for additional review.

The Oncologist (who I rarely saw) in Bangor somehow agreed to this and was surprised that I even asked. (It might be 4 weeks between seeing your specialist, which if you are dealing with a short death sentence – how exactly is that supposed to work…or maybe that’s the point).  

My Dana Farber Oncologist was a breath of fresh air. I learned more from her regarding what I was dealing with in 50 minutes than I did from almost three months in the Bangor Cancer Clinic. “Our usual success rate with this is at least 2-5 years, she said, and I have some patients 15 years into the treatment.  Can we retest your sample?” 

By the end of July chemo #4 was not working.  I had decided to return to Ireland.  Amazing how quickly things can happen sometimes.  Somehow I was on the plane on August 3rd, getting in to Ireland early morning on August 4th – 26 years to the day that I left for the states…August 16th my cheerful Dana Farber Oncologist called me directly to say my original diagnosis was incorrect…I was dealing with Triple Negative and not Est+ her2- as previously diagnosed.

I had planned on writing this post for some time now, and today when I saw it was April 17th I am delighted to say that I am alive and doing very well. 

Here is to God, Divinity, Good Friends, Support Systems, Songs in the Night and all the other people, places and things that come to our sides in our times of abundant need.  

I know one thing, I will do my very best not to drive off in a car wearing slippers ever again! As I usually say never say never. 

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