Out in the open.

So much time has passed since my last blog post.  These last three months have been rough. So many changes that had to be sorted out.  New symptoms that could be a part of the healing process, or could be a sign that the tumor is spreading.

There were good changes, and bad changes.  I was, again, able to chew and swallow, with no pain.  I could taste again.  My hair was growing back where the radiation had burned it off.  These were all signs that things were healing - good things were happening.

I lost a tremendous amount of weight.  I started at 195 lbs., and am currently at 160 lbs.  It continues to drop to this day.

I kind of feel bad for keeping you all in the dark.  But, we weren't sure until just recently, what was happening.  Things were changing and evolving everyday.  I honestly didn't know what to say.

I met with my Medical Oncologist, Dr. Yasar, up here in Minocqua, back in July 2021.  It was a scheduled visit - a follow up from the last visit.

She asked if I had any new symptoms to report.  I have lost, well, half of my voice since we had last met.  I also have trouble swallowing, in that, I can chew and swallow, but it will get stuck half way down - just below my trachea.  At least I can still breath.  The only way to get it to go the rest of the way down is to drink a couple of gulps of water to wash it down.  Then, I found that when I swallow any type of liquid, it tends to come out my nose.

She suspected that the tumor is still growing and spreading.  The symptoms indicated that the 9th and 10th cranial nerves were now involved.  Not good news, since the 9th and 10th originate in the bottom portion of the brain stem (Medulla Oblongata), while the 5th, that has been involved from the beginning, originates from the upper (Pons) portion of the brain stem.  The only route the cancer could have taken to get from the top to the bottom, is through the brain stem.  Really bad news.

I remember reviewing the November 2020 MRI with Dr. Neal, almost a year ago.  He pointed out that, whatever this thing was, had tracked along my 5th cranial nerve and had reached the Pons area of the brain stem.  He referred me to Dr. Lee and Dr. Yasar in the Oncology department in Minocqua.  It had not yet penetrated the brain stem, but was right there.  

Back to my July 2021 visit with Dr. Yasar, when it was all said and done, she felt that there was no more treatment for a cure.

She sent a referral to a local Ear, Nose and Throat specialist, Dr. Min.  I saw Dr. Min on August 11, 2021.  She scoped down my nose and looked at my vocal chords.  She found that my right (yes, right) vocal chord is paralyzed, making it hard for me to speak with any volume.  I asked her to give it to me straight, and she did.  Not only has the tumor spread through my brain stem, it is now effecting the cranial nerves on the right.  I don't want to quote her because I was in a bit of shock and I don't remember exactly what she said.  But, the jist of it is that there was a better chance than not, looking back to November 2020 MRI, that the tumor would invade the brain stem.  I said, "Wow, that sounds terminal".  She said, "Yes, it has been from the beginning".

I'm not sure if it was my overly optimistic attitude that kept me from hearing the truth, or maybe their reluctance to give me the bad news (assuming that one of the other doctors already had).  Either way, I missed it.  This is why it is so important to have another person along with you when meeting with doctors.  Like most guys, I tend to not ask enough questions.  But, in all fairness, in November 2020, no one knew what it was.  Cancer was suspected but not confirmed until January 2021.

Back in November 2020, Dr. Neal referred me to Dr. Lee - Radiation Oncology at Marshfield Clinic in Minocqua, WI.  I met with Dr. Lee who went over the scans in great detail.  He explained that with the extent of tumor growth, and the type of radiation that he uses (Intensity Modulation Radiation Therapy - IMRT), the radiation would most likely kill me if we tried it.  He spoke of palliative care, which is given to patients to give comfort.  Most often when they are terminal - or, when there is no more cure based treatments available.  That should have been a big red flag for me.

I remember saying, "Is that it?  Is this the end of the line?"  He suggested proton beam radiation therapy.  It is only available at Mayo in Rochester, MN or Northwestern in Chicago.  As you know, I went to Northwestern.

Back to the present.  On September 4, 2021, I was just feeling lousy.  Head ache, neck ache, back ache, dizziness, my walking gate had changed, I would get nauseous and throw up - something was definitely wrong.  Kathie took me to the ER, but there wasn't a lot they could do.  The ER doctor put in a call to Dr. Yasar's office to call me.  Monday was Labor Day, so on Tuesday, I got ahold of Nancy, my good friend, Nurse Practitioner, and strong advocate, from Dr. Yasar's office.  

I was scheduled to have an update MRI at Northwestern Proton Center in Warrenville, IL, on the 17th of September.  Nancy felt it shouldn't wait so she put in an emergency MRI request, contacted my insurance to make sure it was covered, got with Northwestern to keep them in the loop, and got with Radiology to contact me with a time.  Thank you Nancy for really looking out for me.

I was on the table, having my MRI the very next day.  Nancy called me in the next day to review the results.  Kathie came with me.  She started by saying that she called me in because she couldn't say it over the phone.  The news was bad.

The pathology report came back that I have a condition called Leptomeningeal Carcinomatosis, which means that the cancer is present in the cerebral spinal fluid that surrounds my brain and circulates through the spinal chord, nourishing every nerve in my entire body.  If there was such a thing as a "worst case scenario" in the cancer world, this would be it.  There's no coming back from this.

I find it interesting that we can look back at all of the symptoms and see the whole picture with clarity.  But, when things are unfolding in real time, the truth is that we have no idea the full extent of what would come next.  I was asked questions such as, "Have I noticed a difference in the tone of my voice?"  At that moment, I would answer, "no".  Or, "Have you experienced a fever?"  No, again.  Then two days later, I answer yes to both.

Then it is decision time again.  The doctors give a couple of options to try.  I could easily turn them down and not do anything.  But, shouldn't we at least try?  I was given an option of Immunotherapy/chemotherapy.  It's all experimental since each cancer acts differently in each patient.  I decided to give it a try and see what happens.

On Monday, September 13, 2021, I sat in the chair and was loaded up with chemicals that, under certain circumstances, would kill a horse.  Day one, came and went without any problems.  The regimen called for the third component being administered slowly, by way of a portable pump, over the coarse of one week.  Even still, by the end of the five days, no problems.  The pump was removed on Friday.

Day six, Saturday, is when the it all went terribly wrong.

I'm not writing this to discourage anyone from getting treatment that could very well save their life.  Each cancer is different because each patient is different.  In my case, I had a less-than-desirable outcome.

I went from eating with the help of washing it down with a quart of water at each meal, to new and worse mouth sores than ever before.  I went from being very well hydrated, to so dehydrated that I woke up Wednesday morning September 22, 2021 feeling that my organs were shutting down.

Did I tell you that I have the most awesome family in the entire world?  Those who know my wife Kathie, daughters Jamie, Kate, and Jess may already know this.  But, what you don't know is that my Dad, and brothers Martin, Jim, and Dave, bought plane tickets and flew out here Tuesday to help in anyway they can.  Jess drove up from Chicago to help Jamie and Kathie.  

I woke Jim at 4:00 a.m., on Tuesday morning, asking him to take me to the hospital.  He and Martin threw me in the back seat of the car and hauled me off to Marshfield Hospital in Minocqua.  Four 100ml bags of standard saline later, and I was just starting to feel better.

The sores in my mouth, this time, were keeping me from eating or drinking anything.  We all agreed that the most practical way to keep me alive was to have a feeding tube inserted in my stomach.  I am now able to control what I eat and drink, with no pain.  Maybe a little messy, but we are getting better with practice.

I signed the paperwork today to be officially placed in the Hospice Program.  They will do whatever they can to make me as comfortable as possible.  Three to six months is what they are hoping for.

Please don't be sad for me.  There is still work to be done in the time remaining.  Now that it is all out in the open, I can be free to get back to telling my story, in hopes that someone, faced with the same problem might find a little inspiration in my words.

By the way, my Mom, and sisters Roseanne and Mary are planning on coming next week to spend some time.  They say that you don't get to pick your family.  I'm glad I had Someone with a little better handle on things, pick mine for me.