Sigh - Here we go again

This Sucks.

There is no way to candy coat this, I’ve been dealing with some bad news on the family front and have been reluctant to talk about it. As if somehow not talking about it will make it go away or make it easier to deal with.

My brother is sick.

Actual Facebook exchange between Steve and I re: this photo:  

Susan: Christmas 1977 - Poor Stephen Kent - already putting up with my dramatics.

 — with Stephen Kent in Mary Esther, FL.

Stephen: LOL, those tinker toys pissed me off, I remember asking mom to rid me of the foreign objects in my sisters head…. I remember you saying that you were an alien…. don’t get me started susan.

Susan: Steve, I know, it’s hard to have such a creative and imaginative sibling. Hit it Steve! Ha! J

Stephen: shut up susan… LOL

I mentioned in several posts here that in addition to me, both of my siblings inherited MEN1.  This post is looking back on what it was (is) like for all of us to be diagnosed and treated.

It is almost exactly four years ago that my sister called me to say that she had gone in for an MRI and asked if I remembered Dad’s symptoms. The Olympics were happening as Debbie began her journey of treatments. We sat on her couch and watched swimming and gymnastics together. Some of my earliest memories with Debbie were watching Nadia get perfect 10s in the 1976 games and it was bittersweet to watch her last Olympics with her in the summer of 2008.

So here it is the summer of 2012 and my brother is on the similar journey of treatment. Steve has been impacted by several complications of MEN1, but most seriously by thymic carcinoid. It is a rare, but abnormally aggressive form of neuroendocrine cancer. Steve had surgery in 2009 to remove his parathyroids, thymus, and a tumor that was close to his heart. It left a very impressive scar on his chest. In 2010 he had a recurrence that he managed to fight off with some intense radiation. His oncologist told him then that this radiation treatment was a onetime deal, the next options weren’t promising.

And life went on, amazingly without recurrence for quite a few years. Steve would have PET scans and they would come back clear. He was even beginning to think about the possibility of a pancreatectomy, because he has the same malignant pancreatic tumors that my sister and I had but his medical team would not operate as long as something far more aggressive and malignant was at his doorstep. But he had been clear for so long that it was starting to look like maybe it was worth considering the pancreas surgery.

No matter how many times I go down this path with my family and friends it is always the same; there is what you dare to hope and what you logically know when it comes to cancer. I get through a lot of this by being a logical and methodical person. I knew with my logical mind that it was all but certain that the carcinoid would come back but my heart held out quiet hope for a different, miraculous outcome.

Many weeks ago my brother called and told me that he had been having tremendous back pain that had sent him to the ER a couple of times. They finally ordered an MRI which showed suspicious ‘growths’ on his spine and neck. (BTW – I would like to compile a list of what words have been used on radiology reports in an attempt to not say tumor. Hot spots, suspicious areas, etc., etc. Yeah, yeah, we get ya.) Steve’s oncologist ordered a PET scan which confirmed what was on the MRI, and a biopsy of one ‘spot’ made it official; stage IV metastatic spread of his neuroendocrine cancer to his spine and neck.

Like I said, this has been going on for weeks. This is the part of cancer that many people don’t see firsthand. The initial discovery of something suspicious, the confirmation of something suspicious, the biopsy, the treatment plan, the next treatment plan. And all the WAITING in between. Going from I *might* have cancer to it’s *likely* I have cancer to I *do* have cancer. The waiting and testing is so slow and tedious that by the time you get to a definite place you’re like, LA, LA, LA I have cancer. As pictured below:

October 28, 2008

Yep, that’s the day I got diagnosed and that’s exactly how I felt. For God’s sake let’s get it on already.

But you don’t get it on already because then there’s MORE tests to rule out something like spread to your bones. My brothers metastatic spread to his bones is what I had to have ruled out before having my surgery. So I had radioactive injections a couple times, laid on a metal table, and had a scanner pass over me at a mind numbingly slow place checking my skeleton from head to toe for any spread. Any little blip had to be analyzed and you find out weird things about yourself like having a bone island in your hip and a bone scar on your scapula. (“Are you sure you didn’t do anything to your shoulder?” Uh, not that I’m aware of and who cares if it’s not cancer.) All the time just praying and hoping that I’m OK and mourning that my sister is not. Not having the time or energy to be too upset for myself because my sister is going through something far worse and more painful and just wishing and praying that will somehow go away. And then the prayers turn from miracles to just wanting a good option and then, finally to prayers for peace and rest.

Steve has already been through treatment option #1. MIBG isotopes  - didn’t work. Now we’re on to treatment option #2 – Tasigna. It’s not a great option because Tasigna is primarily a drug for Chronic Myeloid Leukemia but it does work occasionally on carcinoid and makes me feel good about being a supporter and fundraiser for the Leukemia and Lymphoma Society all these years. If that doesn’t work we’re likely on to chemo which doesn’t have a great effective rate either.

I suppose I could get very angry about the lack of effective treatments for endocrine and carcinoid cancers. I wouldn’t wish chemo or radiation on anyone but do sometimes regret that there had been a second line treatment for me after having my pancreas surgery to just quash the threat of recurrence. But the fact is that these treatments wouldn’t have been productive and who needs that level of suffering for nought? It’s hard to hold a grudge when the treatments others are receiving are so debilitating. There are no ribbons that symbolize our cancer but I don’t think I would wish for a bigger affected group. I find a lot in common with other survivors regardless of whether our treatments are the same and I’m sure they are envious of my getting to skip those treatments that have left them scarred physically and emotionally. If anything, I only wish for more and more research for ALL cancers as one will hopefully lead to an effective treatment for ‘my kind’.

So things with Steve are as good as they can be right now. His pain meds are working which is pretty amazing if you’re familiar with the intricacies of getting that precise mix going correctly. Here’s hoping there is a treatment we can find to stop or slow down the tumor growth and the pain meds keep on working at the level they’re at.

I'm keeping up a Caring Bridge site for Steve at: http://www.caringbridge.org/visit/stevekent

Debbie, Susan, and Steve - Sept. 2008