Pretzledog moment

I have been humbled a few times during my life time. The last week has definitely added to that feeling….

My routine check up ended in a mammogram and an ultrasound. A very sweet doctor who looked at the film, said he had lost his wife to breast cancer and wanted me to biopsy that sucker. A few emails and phone calls later, I was on the table of two doctors at UPenn.

The procedure was amazingly quick and painless (at that moment). The younger doctor operating the needle seemed to be the understudy and was very diligent about her craft. After they took five samples, she told me that a marker was going to be in place of the lump.

I rolled with anything they wanted to do and imagined a piece of plastic in that place. In terms of shape, a dog tag came to my mind for a split second. At that moment, I did not give more thought to THE marker.

They both were assuring that the appearance was benign, so I am going to ‘roll’ with that unless I am told else wise. Based on her assumption, she opted out of the mammogram that was supposed to follow. The thought of getting my boob squeezed between two cold plates did not seem appealing to me either, especially since the lidocaine wore off and it was beginning to hurt…. somehow the tech did not overhear the doctors orders and took me for a mammo anyway. I just wanted to go, so I tagged along… and boy, am I glad I did!

What showed up on that mammogram could only be described as one of those moments..

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A freaking cancer ribbon in the midst of my presumably benign growth! I looked at the picture, looked at the tech and the doctor who had now come in and I just started laughing… like I could not stop laughing. I told them that this was a really nice touch in terms of keeping up the spirits of a benign growth! Hahahahahaha (I am still laughing writing this..)

They did not share my exact humor but that’s ok ūüėČ

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Putting the down the sword

1491990205555-1Many might not agree with me on this and even get aggravated reading this. However, putting down the sword will not mean defeat. What were we ever battling anyway?

Our bodies are certain to wither away the second we are born. It’s something we do not think of a lot because it causes sadness and anger to think of death and dying. We live in an illusion until the day comes. Some of us might not see that day coming and it just happens – instant death. A tragedy.

Yet, then I remember the luxury of knowing Ken would die. Same tragedy. Struggling for every day and battling a disease only then knowing he would have to surrender to it. Worse tragedy?

In terms of how he died, yes. It was horrid. But the luxury of being aware that the end was near was absolutely price less. We all know that we will die some day. We just ignore it and pretend we are all here forever. In fact we are all terminal. Knowing that leaving this all behind us, and living in that moment every day, is a luxury.

Of course no one wants this luxury because it is associated with a terminal disease. But just for a moment, consider it as a luxury. Prepare in peace and when the moment comes, try to gracefully put down the sword.

It’s ok to let it go. In the end we are all going to reunite one way or another. No one will judge anyone based on not having ‘won’ some ‘imaginary fight’ that we did not pick in the beginning. I strongly dislike this movement. It makes letting go so much more difficult.

Ken barely put his sword down three days before his time was up. He let it go with grace and it gave peace to those around.

 

Rainbow Bridge

It’s been a while since my last post… a few personal troubles have come between me and this blog. But we shall live and learn after all ūüôā I took my kids on a trip to the Niagara Falls in Canada for a few days during this spring break. The weather was cold, so we could do everything BUT the boat ride. I promised that we would be back this summer to ensure we really covered everything these falls had to offer.

The kids are at a stage where they can enjoy and appreciate things and it makes traveling with them a lot nicer and rewarding. They, and neither did I, appreciate the border control. They thought it was intimidating and they were scared we would get pulled over. As we went into Canada on the way up, the border patrol officer was nice and just asked a few questions and let us get on with our 7 hours trip.

As we left Canada, we found ourselves crossing the rainbow bridge. Marveling at it’s name while we drove over it, I noticed that it wasn’t on the route I had mapped out. I was not planning on leaving Canada this quickly but I suppose my wrong turn made that happen. As we approached U.S. territory I could not get my passports out quickly enough and made it to the border patrol with windows down just barely.

His questions were more interrogating and detailed than the first one’s a few days prior. He finally, and this has never thrown me off, asked where dad was. I was caught completely off guard and choked up while responding to him, ¬†that dad had died of cancer almost five years ago. He immediately handed me the passports back and wished us a safe trip back.

We are one month shy of his 5 years anniversary and I usually do not choke up when I get asked about Ken. This shows that love always stays with us and that the rainbow bridge is always waiting, even when we do not plan on going that route just yet.

So, hug what you hold dear while you have it and enjoy every day as if it were your last.

Adjustment Disorder

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This post is from my friend Sherry who has been battling Adrenal Cortical Carcinoma for way too long. I took this straight from her facebook post with her permission….

“…I printed medical records for a doctor today. I have a new diagnosis that made me laugh! It’s called “adjustment disorder”. They are right! But when you come out of the hospital with a problem you didn’t have, adjusting isn’t necessarily easy or a good thing ;-). More than once, I wish the doctors could live in my body for just 1 hour so I could see how well they adjust! Adjustment isn’t on my agenda ;-). I even get to explain to a psychiatrist why I’m not adjusting- lol. Looking forward to that one- seriously!‚Ķ”

 

 

 

 

 

 

Got smokes?

With Jeff’s permission, I took this directly from his facebook account. Jeff has been battling with stage 4 Adrenal Cortical Carcinoma since August 2013. He is such a warrior!

 

“…Today has been a day of thinking, which is probably not a good thing, tomorrow I start my 30 radiation treatments and can’t help but feel a little apprehensive. Is has been the least invasive treatment offered to me so far and the hardest decision to make. I know that makes NO sense but that’s the way it goes… I guess. The good part about is I think I made the right choice of where to go, the nurses, techs, and docs are great. They all make it just a little bit fun with there comedic joking. Makes me feel good to joke with people even when I feel like shit. Well I know it’s still early in the evening but dumb me asked for a morning slot, and I’m not a morning person, and I got one so I should go and wind down for the evening. Peace out all and much love!!!..”14199726_1314172955268993_8044247663276229401_n-3

“‚Ķ.It’s the best when you catch them off guard. Becky made a joke at this last appt. when they asked if I smoked she said no that causes cancer and it was still for a second and then we both cracked up and so did the nurse, who is a joker too, but she didn’t know us that well yet so she didn’t know how to react. It was hilarious‚Ķ.”

‘Brief trip’ by Alan Cupal

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23 July 2016

It’s 1:00 a.m. on a sultry Sunday morning in Michigan. I can’t sleep. I can’t imagine why? So many things ‘rattling’ around in my heart and head. A friend, a little sister, kind of friend is losing her abilities to function as her cancer eats thru her CNS (central nervous system) and brain. I can see the small things now. The slightly unsteady gait, loss of the little weight she had, her hearing is fading, leptomeningial carcinomatosis doesn’t fuck around. It doesn’t spare anyone! It just progresses thru your brain wreaking havoc – killing with brutal, painful, awful efficiency.

Dr’s say she’s terminal. She has 3 more months of function left. I hate to say this, but I don’t see it that way. I’d say 6 weeks before things really start getting difficult. I can only hope that the end is fast, and God is Merciful. Not just for my friend, but for her 12 year old daughter, and the rest of her friends and family. And even selfishly for me. We all are talking about the ‘good times’. All the fun we’ve had…. Even all the bullshit things we’ve seen and lived thru. It seems to help anchor us, cement us together. To bring a welcome distraction of what we all fear – the storm that is coming.

I have died once. It was a brief trip. My old college roommate and fraternity brother Karl met me someplace just outside the Pearly Gates. I say that as I did have the typical NDE experience. Bright light, warmth, untold peace and happiness, and a sense of complete and total peace. It was an amazing experience. Karl and I were talking… having a phone conversation. That’s what I thought it was. My Father and Grandfather were there too. They didn’t speak or say anything to me. They where just THERE. Kinda like they were just saying ‘HI’ and let me know they were okay.

Karl told me “its not your time yet Alan. So go back. You’ve got lots to do. Many many things to do. I miss you and love you too Alan, but I’m okay. Now go back. Love you bro’!!” And like that it was over. Just as quick as it happened it was over.

It took me about six months to piece together what had happened that day. I thought I was hallucinating from my pain meds. I wrote it off to that for awhile. But, then how do I explain looking down at my big Lab Bobo The Wonderdog? I looked down from somewhere – and he met my gaze. I was floating above my room, either on my way up, or down. He was looking right back at me! This happened to me nearly 3 1/2 years ago. He hasn’t let me out of his sight since. I walk out of a room and he follows me. Every fucking time!!

I know that I will talk to my friend about my experience. I’m hoping to do it in the next few days. I just need to find the right moment. I wanna tell her that it’ll be okay. Not to be afraid. Share my experience in all its details. I’m hoping she’ll find comfort in this. I’m hoping I’ll find comfort in this. I want her to know that this place isn’t the ‘end of the line.’

I’m crying now. Hoping I do a good job. Its important you know. No one wants their loved ones to be afraid, to suffer. Perhaps it’ll help her in some small way to leave us and everything Earthly behind. And I want her to know that I’ll honor my word to help look after her daughter. Take her on some trips, teach her how to drive a car, throw a football, talk about boys, and help how I can to make sure that she goes to college.

I’m just torn up. Feeling weak and a touch vulnerable. And how can that be? I’ve ‘fought my battle’ with cancer. To me, its not a battle. I didn’t pick this fight. I didn’t kiss somebody’s girlfriend in high school and her Dude said lets take it outside and fight over honor or anything like that. It just happened. I got sick. I didn’t want to die. I didn’t want to leave my daughter without her Dad. So I wake up.. every FUCKING DAY!! It doesn’t matter how sick, or hurting I am. I get THE FUCK UP!! And I make sure I keep doing it.

I know to my core how lucky I’ve been. I’m grateful for every moment I’m here. If I could have one wish, it would be this – Please Lord be brief with my friend. Time is a luxury that she doesn’t have. Please be Merciful. Amen. Your friend – Alan

DOC 101/ End of life/ hospice experience

Below is the short speech I gave at UPenn’s class DOC 101. It was a class for med students to share our experiences about end of life care and the hospice experience.

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In May 2012 my husband of 7 years and father of our then 2 and 4 years old children passed away from an ultra rare cancer. Despite the grim diagnosis and outlook, he fought this aggressive cancer for 11 painful months. He stubbornly insisted on receiving experimental treatment until 3 days before he died.

Even though we had seen many different oncologists in many different states, no one had ever tackled the topic of hospice. The term palliative care was thrown at us once and also that there was nothing else we could do to fight this kind of cancer. Neither were we ready to throw in the towel just then or did we even know what palliative care was. It was not until we met Dr. Stephen Keefe here at UPenn that hospice was even mentioned and explained to us. Dr. Keefe tried to break the ice more than three times. Each time my husband and I dismissed the mere idea of it. Because hospice meant to us that he would have to die.
Now, even though we had his advance directive, last will and living will in place, he and I both hoped for a miracle until almost the last minute. Even though we both knew intellectually that this battle could not be won, we were not ready to admit it. We had two small children and it was my husband’s worst nightmare having to leave the kids and me behind.

During his last hospitalization due to the ever increasing water load in his body, we were almost harassed daily with hospice admission paper work. At that point, Ken must have dragged around at least 30 lbs of excess water, which was mainly contained in his legs and torso… I remember the skin on his legs literally tearing apart in front of my eyes. Even though I understood why a hoard of 6 doctors entered his room and kept insisting at least twice a day, why he should be on hospice care…their method failed and he insisted on discharge to receive treatment. He received Torisel for about 5 or 6 weeks until finally that Monday morning.

That morning, after I had taken the kids to day care, I returned home and knew something was different. He was no longer able to walk , and therefore he had to sleep in the living room on the couch‚Ķ. and I will never forget the gurgling sound of his lungs while he tried to breathe. He woke up that morning, looked at me and said that he could no longer go on like this. I agreed whole-heartedly with him and it took one phone call to Dr. Keefe’s office: home hospice was fully set up and everything was delivered to our house within 2 hours!! The Wisahohicken hospice truly made the hospice experience easier than expected. Everything and everyone was almost instantly available and their service was outstanding. Being on home hospice enabled us to have family visit at all times. And the amount of family and friends that showed up during those last three days was incredible.

Ken was coherent during the first two days and we had some time to say the last things that needed to be said. I was able to tell our kids that daddy was getting ready to live with god and angels very soon. They were able to sit with him on his bed for a little bit at a time. Every minute that we spent was spent together.

On the third day, we had the most company. Ken’s boss from DC and his best friends made it up from Virginia to spend the day with him. Unfortunately, they saw him at his worst. He was no longer coherent and was struggling to pass. That evening, our kids kissed him one last time good-night and he died in the arms of his brother and me around 10 pm.
While my husband died the death he was afraid of dying and that I would not wish upon anyone, if it would not have been for hospice, there would not have been any closure.

During his entire cancer journey, he was afraid to leave the kids and me behind and he admitted in the end that he felt guilty for leaving us. I tried to take that guilt from him during those last days. I hope I succeeded.

Life is short and while everyone prays for a long life or a miracle in the end, we have to face mortality. I believe modern medicine has one serious flaw: the flaw that we think we can prolong life and push mortality away. Sadly, among those many oncologists that we encountered only one had the courage to talk to us about hospice – and not just once, he was very persistent – but still let us make the decision.
If you take anything away from this here today, let it be the plea, that when you become doctors to always bear in mind everyone will die. And that suffering a terminal illness (no matter how horrible), enables us to prepare and plan ahead. Even though the cancer road was long and painful, I still, to this day, value the single fact that we had time to come to terms with love, life and family.
Please remind your patients that death is part of life and that certain institutions – like hospice – can greatly help find closure and peace in the end.