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It’s been a while…

November 14th, 2015 No comments

… a long while actually, since my last post.  More than two years – wow.

If you know me at all, you know my obsessions almost always dominate my life.  Hobbies are things that I pour myself into 1000%, often to the detriment of other aspects of my life and relationships.  Obsessions often come and go in phases too – I pick something back up that I was unable to put down in years past and then forgot about almost completely – it’s a cycle, always.  Sometimes they’re awakened by accident, sometimes by a void that needs filling.  This blog has seen its share of those obsessions wax and wane, my heart often overflowing to the point it needs an outlet, like this.

Which is why I find myself here again…


It started in August of 2013, my then-24 yr old son, a husband and father of three young boys, had a growth removed from his back that was positive for melanoma, along with one very suspicious lymph node nearby, also removed.  He followed through with his frequent PET scans, saw specialists in nearby cities and believed if the cancer returned, it would be on his skin and he’d see it, have it removed too, and go on with his life.  I knew at the time that wasn’t usually how melanoma worked.  It is aggressive, insidious, and very, very quick.  I tried to explain this to my son, and he listened but as is the case with most 20-something young men, he felt invincible and quite safe.  He was anything but safe.

In June of this year, 2015, he had a serious accident in his work vehicle.  He drove for FedEx and loved his job.  A mechanical failure on the truck he was driving caused him to lose control and wrap it around a tree.  Help was there almost instantly, the home on the property where the accident occurred belonged to a First Responder who was home, immediately made the 911 call as well as to family, and an ambulance was quickly on the scene.  My son wasn’t badly injured from this accident (miraculously, as the truck was totaled) however OSHA protocol dictated he be ruled out for head, neck, back trauma and he was taken to the hospital for evaluation.

In the process of ruling out head trauma, MRIs were done of the brain which revealed five tumors, the largest situated on the brain stem in the pons region – which controls muscle movement of the body.  More scans followed and more tumors were found, in the lungs and lymph nodes.  The news was crushing to those of us who understand more about cancer than we’d care to; my son and his family were shaken but we all quickly latched onto the fact that had it not been for that accident and the workup that followed, we’d never have known the melanoma had metastasized so widely.  You see, while PET scans show intense concentrations of glucose in areas the body which can usually be identified as cancer, the brain uses so much glucose to function that PET scans are of no use in watching for metastasis to the brain.  That MRI for head trauma was crucial for finding his tumors – and doctors were amazed that the tumor at the pons was as large as it was without causing symptoms or seizures.

Things happened very quickly then.  It seemed like all hands at his local hospital were working for him – Social Services secured him insurance coverage – Oncology, medical and radiology, were putting together plans and whole brain radiation started the next day – and connections were secured with Memorial Sloan Kettering in NYC, the finest and most highly rated cancer center in the United States.   A consultation was held and my son had himself a medical team to give him the best chance of seeing his sons grow up.   We were all so very optimistic.

I left immediately to fly back east and be with my son and his family. My employer could not have been more understanding, generous and accommodating.  My significant other of 13 years could not have been more supportive, kind or helpful.

After the initial 15 rounds of whole brain radiation, which the local radiation oncologist was highly confident would either significantly diminish or completely eradicate the multiple brain tumors, the treatment plan began with immunotherapy.  A central line port was placed and infusions were given every two weeks.  We all prayed and sent as much positivity and healing as we could muster.   This opportunity to just be with my son and his family was priceless.  Friends and family encouraged them to utilize a crowd funding campaign through GoFundMe, as my son could not work and they had no money coming in at all.  But my son and his wife felt they couldn’t ask for money from strangers.  When enough people let them know they felt this was a good idea, I was asked to run the campaign.  I set it up that day – and in only a few weeks the support poured in.  To this day, in just a few months, we have raised over $15,000 which has been a godsend for them – enabling them to pay bills and at least some of the overwhelming medical costs.

Followup brain scans showed that the radiation had had no diminishing effect on any of the tumors, other than the fact that they weren’t larger.  And other than creating swelling of the brain tissue such that no further radiation was possible.   The immunotherapy would not affect the brain lesions either…  we waited for the next step in the plan.  It’s here that my own brain has difficulty with the timeline of events.   There were consultations at larger hospitals for targeted brain radiation to only the pons tumor, but it was not safe to risk more swelling than was already present.  Immunotherapy continued.

Then after believing he’d injured his back lifting his youngest son, he had a precautionary MRI of the spine before being considered for chiropractic care or physical therapy.   But it was not an injury – it was a tumor on and in the spine.  Several of them.  More scans revealed even more – liver, kidney, adrenal glands, more lymph nodes… plus all the existing lesions were larger and had multiplied – eight now in the brain, numerous in both lungs…

My worst fears were coalescing into a nightmare from which I pray constantly I’ll awake.  Again I dropped everything and flew back to NY.  When I arrived I found my strong, tall, macho son using a wheelchair and recovering from several falls.  He’d been having periods of confusion and disorientation, weakness and joint pain.  And it turns out you can truly feel your heart breaking in your own chest.

I stayed only two weeks this time – knowing that my son has his own family now and that they need their time together as well.  I cherished every single moment of that visit.  While trying almost desperately to remain positive, I was still afraid that any moment might be our last one together.  Treatment was not working.  The immunotherapy was stopped and a combination of two chemotherapy drugs begun.  Radiation is still on hold.

Which is where we are now.   This is what I imagine I will be writing about for the foreseeable future.

…to be continued.