8/16/14 – Change of Plans

Now that I have had a good night sleep for the first time all week – thanks Percocet – I can reflect back on the past week and what lies ahead for our family in the constant battle that we face called Myeloma.

I spent four of five days last week at Mount Sinai including yesterday to meet with Dr. K, who will be radiating the tissue found in the MRI.  It was a wild week full of emotions.  In fact, I slept so well last night that it is almost noon and my head is still a little cloudy.

I brought my MRI disc to Dr. J on Monday to load into the Mt. Sinai system.  On Tuesday, as mentioned a couple of posts back, we looked at it together and saw an intact spine and vertebrae with no fractures or compression.  We did see, however, a mass growing outside the bones.  He wanted the neuro radiologist to look at if further before making a comment.

Wednesday I received an email from one of the NPs saying that the neuro radiologist saw a mass and Dr. J says it needs to be radiated.  That’s it.  A mass that needs to be radiated.  What do I do with that information?  You got it … Google!  Google is the most dangerous thing a Cancer patient can do to themselves.  I was convinced, based on my interpretation of the NP’s email, that I was terminal.  In fact, I was convinced that I had 3 months left.  3 MONTHS TO LIVE!

What would go through your mind?  3 MONTHS TO LIVE?  How do you prioritize?  What do you do first?  Let’s just say that beyond double and triple checking that the life insurance premiums are paid up I don’t know the answer to that one.  I wasn’t very good at the organization of my last 3 months on Earth.  I had too much on the list to accomplish.

What made that even worse was that I spent an hour and fifteen minutes of one of my final 90 days alive on a toilet in the men’s room at the Huntington Hilton on Long Island.  I was convinced that I was going to die right then and there.  Given my aversion to public rest rooms that would not have been my preferred spot for my final breath.  

That is why I sent the email back to the NP and said – “I need to see Dr. J face to face!  From what I am reading, this is a terminal situation!”  She responded back that it wasn’t terminal but that I could come in at 3:00 PM, which is what I did.  It was at that face to face appointment that he described exactly what they found – which wasn’t a “mass” per se but some soft Myeloma tissue outside the bone.  It wasn’t in danger of disrupting my organs as it wasn’t large and wasn’t pressing up against anything.  RELIEF!  

And for those of you who are battling Cancer or those of you (I hope not) who may in the future that is the greatest lesson learned from this experience.  COMMUNICATION is vital between you and your doctors.  I read comments on Facebook forums and Twitter feeds from people who are looking for answers.  My comment back is always the same:  “ASK YOUR DOCTOR!”  And if your doctor doesn’t respond?  Get a new doctor!  t am fortunate.  Dr. J and his staff are always readily available by phone, cell phone, email and they are, for the most part, extremely responsive.  BUT – my lesson learned is that I have to be careful and verify every piece of information and communication and if I am not clear on something it is MY RESPONSIBILITY to make a face to face appointment with my doctor to discuss and gain clarity.

I am NOT going to die in 3 months.  I am pretty sure of that now.  I am, however, going to have to fight a bit harder now.  Cancer just took our vacation away because I have to get 10 straight days of radiation starting next Monday.  We had a shore house for two weeks.  That is no more.  Next week I will be at Mount Sinai again for three days.  I have two days of Chemo, one more MRI with contrast, a biopsy of the tissue and we will do the mapping for the radiation treatments.

In the mean time, we are going to persevere and salvage our family time regardless.  Cancer can bend this family – but it can’t break this family.  Helene and Victor are going to drive to Williamsport Monday and check out some Little League World Series action.  We had to drive back from the shore a few times the first week anyway so Ava could be back for cheerleading so less stress on that front.  Tomorrow we get to see our cousins.  Victor and I are taking a tour of the SNY studios on Thursday night.  And then at the end of NEXT week – Friday – we are going to the shore for one week instead of two.  Thanks to the generosity of our friends the LaContis and the Bergmans, we have a place to stay at the beach that is closer than the one we originally had rented so I can zip into the city Monday thru Friday – get zapped – and then come back to the beach by mid day.  I should also mention that graciousness of my good friend Michael who let us off the hook on the original house in Margate in order to afford us the opportunity to salvage a family vacation.  As I mentioned time and again, our community and our friendships consistently help us pull through situations created by the uncertainty that life now brings us.

So … bad news is the original vacation is out.  Good news is … I am not going to die in 3 months AND we will have a great last week of August at the beach as if we planned it that way all along.  So keep coming at me Myeloma.  I will adjust.  WE will adjust.  My community is stronger than your gang of idiots you’ve got trying to bring me down.

6 responses to “8/16/14 – Change of Plans

  1. There are lots of us out here heaving grateful sighs of relief…..have sun and fun at the shore! Xxxxx. Cousin Ruth

  2. You are amazing! Your positive outlook will continue to help you…and others.
    With love in our hearts to you, Charlotte and Harvey Seigerman

  3. Dear Brad, Helene, Victor and Ana, Good news and good advice! Have a grear vacation. Rest, relax and enjoy family and friends. Love, Uncle Herb and Aunt Roberta

  4. Hi Brad, I follow your blog occasionally and like it a lot. I am about your age with a wife and two young kids and live in Haddonfield, NJ. I have been dealing with myeloma for three years. I was treated and am still registered as a patient at the NIH in Bethesda, MD. I just wanted you to know that one of the world’s first Enigineered T Cell Trials without transplantation just opened up there under Dr. Kochenderfer. He is one of the world’s leading experts doing this research.It is specifically for myeloma. Care, treatment, evaluations, etc. are free and your insurance is not involved. The clinical trial number is NCT02215967 if you want to read about it. Good luck. Your posts have gotten me through many rainy days. Thank you. Terry

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