Tuesday, May 10, 2022

The Long Illness - Part 4

We have come to the fourth and final phase of my chemotherapy treatment for my brain tumor. I am currently in a two-day inpatient IV situation where I am taking the last of my chemotherapy drugs (Cytarabine) before being released.  This has been a long and interesting journey. Mind you, it's not over, because I have to come back for stem cell replacement therapy in another month or so. Thankfully I get a 30-day break from my ongoing in-patient IV treatment before the stem cell replacement therapy starts. Once the stem cells therapy starts it will be another 30 days of lock-down and no context with anybody since I really won't have an immune system.

I'm happy to report that I'm doing well. My brain tumor is pretty much gone and my brain stem is slowly repairing itself and I'm getting back most of the use of the right side of my body. That said here are a few pointers with regard to the treatment that I have been undergoing here at the Mayo Clinic.

As a refresher, my tumor was not operable and therefore was treated with chemotherapy drugs. I managed to avoid having any radiation therapy. However, the chemotherapy drugs that I have been taking have to be filtered through your body, primarily through your kidneys and your liver. These organs only work so fast and slow down the more that you run through them. Therefore the major headache with regard to this form of chemotherapy that I have been undergoing is time. It has been approximately 5 months of in and out patient therapy to get all of the blood pumped up to do its best of drugs and to be filtered out through my organs. Being stuck in a hospital room attached to an IV pole for over 8 days at stretch is not fun at all.

I am currently at approximately 2/3 of the way through my treatment for this illness. The simple truth is that you never really recover from this kind of cancer. I will be returning to the clinic or various hospitals for the next two or three years to monitor that nothing has recurred and everything is still working and progressing properly. Gone are my younger days when you would go to the hospital get a pill or a treatment and be right as rain within one month.

The other awful truth of going through this kind of therapy is that time stands still outside the hospital window. So when you are released, you have to catch up on a lot of things or let a lot of things go because you don't have time or energy to catch up on them. The project list grows very short and the bucket list grows a quite longer. Time management for the rest of my days is going to be the key. 

I'll let everybody know how it goes after the stem replacement therapy is completed which will probably be sometime near the end of July. Then it will be a lot of maintenance work and blood draws to monitor my body functions for the next year or so to make sure that everything remains OK.

Once again, thanks for all the support and the visits in the hospital from various people. It's certainly has made me aware of how much support I have and how much people are willing to take a chunk of time out of their day to come and make sure I am doing all right.

See you all again in about 3 months. (at least I hope so)

Thursday, February 24, 2022

The Silver Linings - Part 3

Not All Journeys Require Haste: 

While driving my dog to the vet to be euthanized, I drove her around town for a long time.  She loved car rides and went back and forth between poking her head out the window and reaching over to give me doggie kisses as we drove ever so slowly up and down the winding city streets.  As always, she was having the time of her life.  I, on the other hand did not want the journey to end, because I knew it would be the last one.  As I drove slowly through the town, other cars whizzed by me, often honking their horns or flipping me off at my slow pace.  They were stuck in their rush-rush routines and could not stop to think that not all journeys required haste.  Some thought their journeys would last forever, yet they seldom do.  

Breaking The Routines:  

We all get into these routines, it is a part of our lives that we consciously do not see.  Waking up in the morning, drinking coffee, going to work, interacting with our spouse, walking the dog.  The things we do to get through the day that eventually become automatic.  

So what happens when those routines are broken for you?  Like being stuck in a hospital room for five weeks with a future that is uncertain or non-existent?  Well, you start to question those routines and their importance.  You are forced to stop and think about what you do and what you have time to do.  That need for haste and repetition becomes questionable.  Re-evaluation sinks in and you realize that you are trapped in those routines and they are not always beneficial.  That is one of the things that this brain tumor has taught me.  I have to realize that I am not driving the car, I am the dog with my tongue out the window.  This car ride does not last forever.

There are only a few really important things left to do, and I need to get busy. 

Body Awareness: 

One of the things that the Mayo Clinic has is the 'Portal'.  This is an app on your phone (don't go to the hospital without a smartphone) that tells you in real time exactly what the doctors know.  It will show you the results of everything that is measured, imaged or written about you in real time.  There is a lot more going on with you than just your weight.  This is the future of medicine, it is monitored on your wrist, on your phone and in the cloud.  It can tell you all those things that are going wrong long before symptoms ever show up, but you have to learn that they are there.  They are a routine that you have to learn but are usually ignored because other, faster routines take their place.  We teach ourselves through youth that we will live forever.  We don't.   

Lost & Found People / Hypocrisy:  

Probably the most profound event that has arisen out of this whole situation are the number of people that have cared about my well being.  Individuals that I do not even know, to friends that I assumed were long gone and forgotten.  They have made themselves known to me like long forgotten specters from my past, much like the ghosts from Charles Dickens 'A Christmas Carol'.  They remind me not to give up and wish me well.  Individually, their Facebook 'likes' and their well wishes are uplifting and gratifying, yet taken as a collective whole they prove beyond a shadow of a doubt that you are more than just a speck on the face of the earth with no real consequence.  There is a tie that binds some of us that is not visible and seldom realized.  I suppose they call it humanity or empathy.  Regardless, it does exist.  Conversely, it also shows those who are only fair weather friends who are only here for their own benefit at your expense.  These are the folks that never attend funerals, they only send flowers.  

Big Pharma / Little Healthcare:  

This is one of those things that I did not expect to question while I was undergoing treatment.  It is my attitude about socialized medicine.  Every major western government has some form of nationalized healthcare.  If you need to go to the doctor, you just go.  Cost is not a consideration.  I always thought that this should be a norm in this country as well (United States).  After having made it half way through my tumor therapy, I am not so sure.  The awful truth is, rich / powerful people get treated first and are treated better than those that 'expect' to be taken care of by the state. 

No national health care system is going to send a doctor to your door to remind you of how you should live, what you should eat, or test your mental state.  The individual has to be responsible for their own health.  If the individual wants to slowly kill themselves with their lifestyle, that should not be a burden on the system that the rest of us rely on.  The national healthcare system should be focused on the individual's understanding of the consequences of their lifestyle and not the expectation of 'free' healthcare after a lifetime of denial and the false ideal that they will live forever. 

"No One Gets Out Of Here Alive"

This is true, although we seldom give it much credence.  It isn't an open ended journey, there is an end to it.  There is a curse that no one should ever be blessed with, which is the date an hour of their own death.  If we knew this we would be fixated on it.  Whether from a sudden accident or a long term illness.  We live as though this date never exists, yet it is the most important and certain date of our lives.  We all need to focus on that date and what we need to do before it arrives.  All those routines won't kill you, but they will waste your time and shorten your life.   

Tuesday, February 8, 2022

Chemotherapy - It Ain’t What You Think - Part 2

Here we are in the third week of chemotherapy, so I have a better understanding of how they plan on treating my condition.  First of all, there is a disclaimer.  No two cancers are the same.  They have different types, different locations, and different treatments.  I will be discussing the treatment that I am going through and how it is being treated.  This may not apply to other cancers that different people can be aflicted with.  It will give the reader an idea of what I am going through; however, the timeline and results may vary in the future.  Time will tell. Above all, there is no way to rush the results.

I have a lymphoma cancer at the top of my spinal column behind my right eye.  This growth put pressure on my spinal column that affected the nerves on the right side of my body from my eyes and ears down the side of my face and eventually affecting my right arm and leg.  

This type of tumor originates in a body's lymph nodes, of which there are several.  So the first thing that the medical staff had to do was determine if cancer had spread or originated in any other locations in my body.  It had not.  The cancerous cells were found only in my lower brain.  However, it took almost three days of testing to confirm this.  The testing was not pleasent.  Along with the complete cancer screening, they did a biopsy of the tumor itself.  

The biopsy consisted of putting me under in the operating room and drilling into my skull to remove a small piece of the tumor for analysis.  This surgery is required to determine the composition and makeup  of the cancerous tumor so they can find the most appropriate cancer treatment. 

There are only three types of cancer treatment - surgical removal of the tumor (not an option based on the location), radiation therapy (invasive with side effects), and chemical chemotherapy.  My lymphoma is best treated with chemical chemotherapy since the other two are not considered successful options for this type of cancer.

Once a patient has heard all the latin-laced jargon that doctors like to use when referring to cancer treatment, I learned that the treatment plan is to dissolve the tumor with specially formulated pharmaceuticals targeted for it.  Once dissolved, the pulverized elements of the tumor are flushed out of my body in my urine.  Mind you, this takes a long time, both to dissolve it and to be flushed out.  Your kidneys only work so fast. It also means that you urinate a lot.  A lot, as in every 45 minutes for weeks.  Kidney monitoring and PH status are a big part of this treatment, which is why it requires a lot of inpatient hospital stays and urine collection. 

I have watched all 18 seasons of E.R., and while they often mention Lasix for patients, they seldom say that this will make the patient go to the bathroom every 30 minutes.   This fact would not make for riveting television drama. 

The continuing passing of bodily fluids makes for a routine where the patient can get by on 45 minutes of sleep a night while providing urine samples every hour.  The whole process has coined the phrase “bladder alarm clock” because it is so regular, 

This continues for weeks, involving three different kinds of chemotherapy drugs that are on-again, resting, on-again and resting for four 14 day cycles  The whole process lasts about three to six months, at which time they perform another diagnostic test to see if the tumor has shrunk. Depending on the outcome of the second diagnostic MRI scan, they tweak the routine and start again, hopefully doing less and fewer treatments.

There is no set treatment schedule or targeted completion times; every diagnostuc outcome can vary and is adjusted based on measurable progress and numbers.  This why the doctors will not give a definite answer, they simply don't know.  It will be near the end of the year before they know if I have beaten this.  

The good news is that this type of cancer is "usually" curable and I will hopefully be over it and back to my old self sometime near the middle of the year.  So I am in a holding pattern, learning patenence and paying attention to my new alarm clock.

In the next blog, I will cover all the “silver linings” that I have become aware of as a result of all this mayhem, you might be surprised, there are quite a few.