I'm Back to Blogging After Kidney Cancer Surgery

Dear Friends, I know you may have been wondering why I have not written an entry in nearly two years. I have gone through so much, as we all do. This road is a tough and lonely one. The combination of multiple system atrophy and corticobasal syndrome are enough with the added challenges of the tracheostomy and feeding tube. The COVID 19 pandemic was a huge inconvenience for all of us, and for many, it meant the terrible loss of family members and friends. I found myself becoming quite inward and the progression of my disease, with the autonomic dysfunctions and increasing immobility, were weighing down my spirit. I became more and more convinced my days were getting shorter on this earth. When my lifelong friend, the Rev. Dr. Jay Bartow, who had been my pastor in high school, passed away in the winter of 2022, I was left with the feeling of great disappointment and sadness. Somehow, we had to find a way to go on. Thankfulness and looking for the good that can be found in each day are two avenues to pursue when times get darkest. You may relate to this kind of experience. 

Then, in the early spring of 2023, my G-tube was creating problems in my stomach. It began to fester and I felt pain. Just the weight of it hanging from my abdomen was painful and I knew, once again, something was up with it. Karrie checked to see if I could get in to see my gastroenterologist, and the conclusion was that this couldn't wait. We were directed to go directly to the emergency room.

While there in the emergency room, the doctor was able to determine that my G-tube would need to be removed and replaced. A CT with contrast dye was conducted to get a view of the state of the balloon holding my feeding tube in place. From this imaging, the problem was understood and the tube was removed and replaced. The pain subsided and the doctor approached us to discuss the conclusions he had drawn. Then, the next shoe dropped. He said, "Some masses were observed in your left kidney and your liver. You should follow up and see what your doctor recommends for you to do next." 

We made an appointment and it was determined by the gastroenterologist that I should have another CT scan of these masses. It was scheduled and conducted within the next month. The results were read and the gastroenterologist explained, "The liver mass is stable for now, and we will recheck it. This kidney mass is concerning for cancer." "I recommend you see your urologist right away." 

We were able to get in to see the urologist within a few days and he reviewed the resulting scans on the computer. The mass had grown and his impression was definitive. "This is likely a cancerous mass and needs to be removed. It is buried deeply in the center of your left kidney and therefore it won't be possible to remove it by doing a partial nephrectomy." He indicated that the entire kidney would need to be removed. This procedure is called a radical nephrectomy. 

I subsequently I had the surgery on June 13, 2023. All went well and required a 6-day stay in the critical care unit of the hospital. Special provisions had to be made for me due to my liquid G-tube feedings and the need to be hooked up to a ventilator each night as I slept (I sleep with a high tech ventilator each night at home as it is required to prevent sudden respiratory failure while sleeping). I was discharged the night before my 68th birthday. We received much support from our sons and their families. The guys, Daniel, Mark, and Stephen all spent time at the hospital. What a blessing they were! Karrie needed that support and it made all the difference. Karrie came each day from the beginning of visiting hours until they tossed her out at the end of the visitation time allowance. 

 The pathology report did come back and the conclusion was that the mass was indeed kidney cancer, stage 3, and that it had been removed with no spread apparent in the region. I was relieved that the margins appeared to be clear. Thanks be to God!  

I returned to the urologist, who had conducted my surgery, and my staples were removed from the center-line of my abdomen. It became apparent fairly quickly that something wasn't right. Our urologist urged, "You will need to go to emergency directly. I need to get you into surgery today." My wound had opened up without the restraint of the staples and began to allow my intestines to protrude out of my body. This was undoubtedly the result of the much coughing I have to do on an ongoing basis to clear my trach opening that gets clogged with fluids. It was impossible to avoid the strain this coughing and clearing had put on my surgical wound. The condition of my open wound was more dangerous that I realized at the time, but I felt calm and had trust that God would guide my surgeon and the team to get things straightened out. 

Karrie bears a great deal of responsibility. This was weighing heavily on her mind and her thought process "wheels were turning". She knew as she drove me to the emergency room that this was serious business! It didn't take more than 2-3 hours for me to be an operating room again. All of my insides and affected areas were washed with sterile water and antibiotics. My organs were rearranged, for a lack of a better way to describe it, and I was once again closed up. Special care was taken to get the area carefully stapled and sutured. I must give much credit to this wonderfully dedicated physician who took such care to be sure I did not get an infection or have another problem with the healing of this incision. I stayed in the hospital 2 more days. 

Now, 7 weeks have passed and I have seen all the pain subside. The wound has healed well and I am feeling back to my normal "abnormal." Once again I am filled with gratitude for Karrie, who cared for me as any nurse would have so well. Our sons and their families were there between these two surgeries to celebrate my birthday all gathered around my bed. All 14 of us were together and the love was palpable! I can't help but be filled with gratitude for the goodness of our family and the professionalism of our doctors, hospital staff, home health nurses who visited and the physical therapists who provided exercise to get me to the point where I could get out of bed after a week at home. 

At this point, I am going to need to be more conscious of my single right kidney. It will need to be babied and paid close attention to in order to keep its function effective and healthy. The cancer does not appear to be present for the time being. This too will be carefully monitored for a number of years. I feel confident that it is gone. Just added concerns to accompany those Karrie and I are contending with due to multiple system atrophy and corticobasal syndrome. 

I have renewed interest in communicating and sharing those things I am able to through this blog. I intend to keep it up and I hope you will again be a regular reader. Please feel free to write to me below or to my email me at danstune@aol.com. I would love to hear from you and receive your questions and feedback. -- Dan

Latest News and Stomach Surgery

It has been an exciting summer as we have also turned to fall.  I went through the change of trach tube from uncuffed to cuffed, with the aim of using the ventilator each night as I sleep.  This process has gone off without much of any hitch!  The ventilator paired with my Portex size 8 cuffed trach tube has worked out beautifully. I am really benefiting from the ventilator.  I sleep much more deeply, wake for shorter periods, and most importantly, breath so much better with the ventilator attached to my tracheostomy tube.  

Our second book, FURTHER ALONG, got off the starting line with a burst of online sales, thanks to all of you.  I have recouped about half of our original expense in publishing, although I haven’t been happy with some of the minor errors not caught by the professional editors.  For this I apologize, and am getting the books going to the shelves improved with these minor errors fixed.  It is hard to write and see everything that is mistyped in such a long document.  The pros should catch things but with all books errors occur.  I am reminded it is the content and the message you want to get out that matters most.  Being there to help fellow patients and their caregivers, to lift and encourage, is my aim.  

The PEG or G Tube, needs to be moved. As you know, the last one ruptured injuring my stomach where the tube enters this vital area.  It was replaced, helping some, but ultimately needed a surgeon to actually move it to a fresh, healthy location.  My feeding tube is long-term due to swallowing difficulties resulting from faulty brain signal confusion, coupled with vocal cord closure on inhalation. Breathing and swallowing difficulty together cause a need to have a stomach feeding tube.  Do I miss food? Absolutely! 

I have surgery scheduled to go in and excise the tissue that is damaged at the old site (removal of a small portion of my stomach), and relocating a new feeding tube where it will have a much better chance of avoiding further injury and/or infection.  Infection is the main culprit of degenerative brain disease demise. Infection with multiple system atrophy can occur in the stomach, lungs, and bladder, among other locations.  Also, the ventilator at night helps to avoid respiratory failure during sleep.  

Thanks for keeping up with my sporadic postings and for all the support in promoting my book.  Happy Holidays! Dan

FURTHER ON: with Atypical Parkinsonism Book Release Announcement

It's finally here! The writing, the editing, the layout, the cover, the illustrations and the printing-- it is a long process but very rewarding! Now the fun part is here. Our book is available, initially in electronic form for E-Readers such as Kindle and Nook, and within hours/days the print versions, both paperback and hardbound will be available. You can buy the e-book right now at Amazon, Barnes and Noble, Apple Books, and several others as we speak. Here are links: AMAZON NOOK Apple Books Here is the write up posted with the book on sites: This moving and intimate memoir reflects on Dan R. Brooks's long battle with a rare, atypical parkinsonism syndrome. It discusses the details of his condition, how it affects his daily living, the changes he has gone through, the amazing efforts his wife and caregiver make to care for him, the impact and support of his family, and the spiritual journey it has taken him through. He speaks of a life with a growing disability and the choices he's had to make as he lives life to the fullest each day, even while in decline and more and more homebound. It is an honest look at how a degenerative brain disease is defined and affects an individual and a family. The memoir is about moving further along in life, knowing that we aren't promised tomorrow, but that we can live today like we will never die. It encourages a strong sense of hope in the midst of struggle against a terrible disease, giving inspiration to keep moving forward to make the most of a life with purpose. Highly recommended for patients looking for hope and inspiration in going through a chronic or fatal illness, and for the families, friends, and caregivers of people with neurological diseases such as atypical parkinsonism syndromes, Parkinson's Disease, Alzheimer's, ALS, FTD, and LBD. Thanks for all you support! Dan

Book Cover Design FURTHER ALONG

Just to give you a taste of my book, this cover gives you a feel. The professional artwork was done by our son, Stephen, who is a full time Visual Designer. Content wise, you will have the chance to read about my near death experience with a breathing emergency that resulted in my trach and feeding tubes, permanently implanted. Also, I describe my time as a patient in a nursing home and what that was like. I talk about overcoming difficulties and how to face trials with determination, love of family and friends and the hope that comes from faith. It should be available in softback, hardback and e-reader form in the next several weeks.

FURTHER ALONG with Atypical Parkinsonism - the Book

 A little update on the book:  The title will be FURTHER ALONG with Atypical Parkinsonism, a slightly different spelling and grammar of the the word "Farther", which I liked.  It will be more correct this way.  The book will talk about my experiences with Deep Brain Stimulation surgery, my near death breathing emergency which resulted in a tracheostomy and feeding tube, some early difficulty with a couple of specialists who weren't helpful, some great doctors who were the overriding majority of great care I received, and some inspiration on the road to dealing with a fatal illness.  

We do have a draft of a cover that I want to share, to get the excitement rolling.  We are looking at a late summer or early fall roll out.  -- Dan

The home owner's association helped us by removing a beautiful shade tree that was sending roots under our house after 47 years.  I got out for some sunshine with Karrie and she snapped this on her iPhone.

 

Nearing Completion of My Next Book --- FARTHER ON

Karrie and I are faithfully being safe, hoping for an end to COVID 19.

My friends and readers, 

The new book is getting near completion.  It won't be too long, page number wise.  But it feels right at just over 125 pages.  I have written about the ensuing years since the publication of the first, I WILL GO ON.  It was a chance for me to reflect on some of the changes that have taken place, such as the DBS surgery and the tracheostomy experience.  Also, I have had an opportunity to consider how I have truly lived on longer than would have been anticipated with a parkinsonian-plus condition such as mine.  I am excited to share it with all of you and I hope to be able to encourage others who are going through similar brain diseases or experiences with a tracheostomy or feeding tube.  I feel my little book will be an inspiration to others who are not seriously ill, as well.  It is a chance to share my personal insights that occurred to me during my near death experience and what I have struggled with subsequently.  Finally, the things these difficulties have helped me to gain are priceless and worth trying to put into words.

Karrie is going through my rough draft now, helping to edit and looking with what I hope is a critical eye for ways to improve my grammar and punctuation in the document I have been writing for most of a year on my MacBook.  I want her input on the content too, as my favorite editor.  She is excellent at this task!

Well, it is time to move on for today, so I just wanted to get that out there.  The book is coming this spring or summer, and I hope that you will help me spread the word.  It will likely be on Amazon by that time. 

Thanks for all you support and interest,  Dan

Replacing Trach with Cuffed Version

I am being scheduled to have my smooth trach tube replaced in mid March with a cuffed version.  This will allow me to be able to have a ventilator at night while I am sleeping. As a result of my brain degeneration, my diaphragm is not fully functional and has reduced my lung capacity.  This is progressive so the ventilator will ensure that when my body is slowed down during sleep that I continue to receive enough oxygen.  It has an inflatable ring inside my windpipe that will seal the trach so that I get a tight fit and 100% positive airflow.  That will mean I will have no speech during the night.  Karrie can deflate it for me in the morning so that I may speak.  Thanks for your prayers. If anyone has experience with this trach type, please write to encourage me in this process.  Thank you friends! 

Starting Book Number Two

It is time.  I have more stories to share and want to put them in a book.  Some interesting and painful things occurred in going to two physicians 10 years ago. I will write about them using fictitious names to avoid harming anyone, but rather to delineate the difficulty of being treated for a rare brain disease such  as I have. These did not include the specialists and Doctors I was diagnosed by originally or those I have today. Hard to believe the specialists I will write about were so clueless about how to respond to a patient in my situation.  These two are not from RMC or Loma Linda and I have spoken little publicly about their treatment of Karrie and I when we sought second and third opinions.

Also, much has occurred since I WILL GO ON was written and published in 2009.  I have had brain surgery with an extraordinary neurosurgeon, and a great new neurologist/movement disorder specialist at Loma Linda University.  Most importantly, to write about how early this year (2020) I nearly died in the emergency room and was saved by the quick thinking of my wife, Karrie, and wonderful doctors and medical staff at Parkview Community Hospital.  My experiences during my time in the hospital, and subsequently in the rehabilitation facility for 6 weeks,  followed by the time of adjusting to a new normal at home as Karrie and I adapted to the tracheostomy and PEG tube feeding are stories crying out to be written. 

“Farther On” is chosen grammatically speaking because “further” speaks of literal distance and “Farther” of metaphoric progress along a continuum.  Farther On is the sequel to I Will Go On: Living with a Movement Disorder, and I hope to complete and publish it early in 2021.  

More news about my writing progress to come.  Thanks for reading.  I will end with a relevant, and one of several favorite Scripture references. -- Dan

Philippians 3:13-14 "Forgetting what is behind and straining toward what is ahead,  I press on toward the goal to win the prize for which God has called me heavenward in Jesus Christ."

Singing with a Tracheostomy

Hi Friends,  I didn’t think I could sing with a tracheostomy.  I have a Passy Muir speaking valve, which allows air in through my tracheostomy, but to exhale it travels past my vocal chords.  Without this I cannot sing, where with it I can sing a bit. Here is my rendition of “Give Me Jesus” by Fernando Ortega. This is my first performance since having a “Trach” put it in.  The tracheostomy results from occasional vocal chord paralysis.  Also, my swallowing problem causes food and drinks to slip into my lungs, so now I eat through a tube in my stomach.  These conditions result from Multiple System Atrophy, an Atypical Parkinsonism disease.   Here is the video.  Dan Brooks

To hear more of my videos go to You Tube at “Danstune’s Channel.”

“Storms” - A Poem from an Old Friend

Some friends last a lifetime.  Gary Edwards and I met in Jr. High church school on a Sunday morning at Lakewood First Presbyterian Church.  As we grew we influenced one another as Christian believers and shared many activities including backpacking and music.  We eventually performed  for a year at various events when I began writing gospel songs. Gary sang harmony very well and played the bass to back my acoustic guitar.  Neither of us had much and we shared meals that we found cheaply or Gary’s dad allowed me to eat at their home where we would grab toast and granola.  We split the rent on a single room apartment in our city’s run down area, which came to $47.50 each per month.

We moved on in life, both of us becoming public school educators and each married with kids of our own. During my recent breathing crisis leading to the emergency tracheostomy to allow me to breath and stomach tube for feeding, I heard from Gary and his wife Sue, who is also my friend from our Long Beach church youth group led by Pastor Jay Bartow. His concern for my near passing from this crisis and the subsequent extended placement in a skilled nursing facility, inspired him to write this poem that Sue helped edit.  I would love to share it with you, my friends.

Storms 

When storm clouds gathered, you told how you’d fret!

Now you’ve been through storms so hard to forget.

But in the midst of the storm, His  shelter you seek.

When the thunder roars and the lightning streaks. 

The storm rages on and on, and you long for peace.

Praying for many years for the wind and rain to cease.

Keeping faith,  looking up , and then the skies do  clear.

God hasn’t changed,  all is calm,  and there's nothing to fear.

You’ve gone through many storms on the sea of life.

You’ve shared with me your heartaches, your sorrow, and strife.

You’ve shown me how  to trust in Jesus, and in Him you abide.

Sharing with me that all through the storm, He's by your side.

Thank you for sticking with me in storms of health,

My car accident modeled your love that brings His wealth.

Knowing that in the Storm and pain,His comfort He brings

As He gets us ready for eternal things.

Praying for you each day as torrents do fall

Showing that in the drought when there’s no rain at all 

His harvest in your life is a spiritual flow

The Son is shining in you, whether or not you know....

With love always, Gary and (Sue)

Thank you to my lifelong friends for the gift of this poem and the genuine concern and love it represents!  - Dan

First time Home Since January 3

I had my breathing crisis on January 3, 2020, which led to my tracheostomy in my throat and PEG feeding tube in my stomach through my abdomen.   Karrie and our son Mark have received training in tracheostomy care and all the many pieces of equipment and supplies are being delivered Monday.  I am going home with Karrie Monday evening.

It will be an adjustment time because Karrie will be doing my trach care and all breathing treatment needed with back up from Mark and our other adult kids all supporting her.  The tube feeding, meaning nothing by mouth, will also be Karrie’s responsibility.  This is a lot. So it is a joyful time, but I know it will be hectic and Karrie asks that for a few weeks at least no visitors outside of the immediate family.  We appreciate your love and support! Dan

Still Going On

January 3, 2020 was a day that changed life as we know it forever.  You will need to go back and read my last entry to have the basic outline of that crisis because I am going to fill in the blanks with this additional narrative. As they were attempting to save my life, and I was on the brink of oxygen deprivation, I looked at Karrie’s loving and concerned face one last time and she at mine.

Since I could not move a single finger or move my mouth to speak, I hoped somehow my eyes would show my need for help and she could convey this to the emergency room staff.  Somehow she knew and when she said “He can’t get air”, they put a large instrument down my throat and then an intubation tube.  Next I went to ICU and discussions ensued.

Karrie and my soon to be surgeon were discussing the conditions that caused my vocal cord paralysis and from Karrie’s explanation, he knew exactly what Multiple System Atrophy was and how it could stop the body’s ability to get proper signals from the brain thus interfering with a person’s ability to breath.  Thank God for this doctor for whom it all clicked.  Also, my own ENT doctor came to see about the situation and contributed a good deal of information about my brain disease affecting my vocal cords.  It was determined the best route would be a tracheostomy with a feeding PEG tube inserted directly in my stomach to prevent the future reoccurrence of the inability to get oxygen or choking on food and liquid which I had been experiencing severely for years.

As I was then put under heavy anesthesia to keep me safe from removing any tubing, I was put on a ventilator and waited out the weekend for a three day stretch before I could be operated on. The surgeon opened a hole in my trachea and inserted a tracheostomy.  During this time I saw and was aware of very little.  I was fighting for life and at times had to be restrained as I unconsciously would attempt to pull what to me were foreign objects from my mouth.

I had pneumonia and fever following my two simultaneous operations, the trach and the feeding tube insertion into my side.  I contracted a staph infection and they had to check my heart function, which through all of this was doing great.  My sons, our daughters in law, Karrie and my brother and his wife all hoped when I made it out of all this that I would still be me and have my full capacities.  Several close friends came by during my hospitalization, for which I am deeply appreciative.

Some great doctors, nurses and staff did and decided so many best practices that led to my successful surgeries.  Now I had my trach in place and my PEG tube, but I wouldn’t be finished fighting.

Next, I will tell you about my dream state from anesthesia and the delusions that followed me for weeks until the medicine all worked it’s way out of my body.  Also, a few weeks later while at the rehab hospital, I had to be sent out to a nearby hospital to have my dislodged PEG tube replaced through surgery.  I will chronicle these and other accounts with my next blog posting.

As I close, I must add that I had no idea how much my family went through until weeks later when through conversations they helped sort out my dreams from their reality of what actually happened.  I don’t write this account lightly thinking it isn’t hard for my dear ones to relive.  They went through so much worry and wondering if they had lost me.  I am so very thankful for all who stood by me, especially Karrie and our beautiful family. — Dan
“I know the plans I have in mind for you, declares the Lord, they are plans for peace, not disaster, to give you a future filled with hope.”— Jeremiah 29:11 (Common English Bible)

Below:  Karrie in my room at the rehab hospital where we learned about caring for and living with a tracheostomy.

Saved by a Trach

I have so much to share but it is not within my power to write all that has occurred.  I have long known my vocal cords, swallowing and breathing risk were big issues with the autonomic failure of MSA.  On Jan. 3, 2020,  I had a breathing crisis and was rushed to the hospital. While there, I struggled until I was near the end.   Karrie helped inform the doctors and nurses of the type of disease I have and they saved my life.  I was under heavy sedation and on a ventilator for several days while the family didn’t know the shape I would be in even if brought back.

I applaud Karrie and the wonderful physicians at Parkview Community who  determined a tracheostomy inserted and a PEG feeding tube placed in my side into my stomach were my best chance of survival and preventing the same breathing crisis from recurring.  I am now in a rehab center full time with experts in learning to use a trach full time and gastric feeding (liquid  only) situation.  Family training is involved and my sons, wives and grandkids have all been so supportive. Thanks to all our closest family, friends and church who have sent love and prayers our way.

I am here by the grace of God, the miracle of science and dedicated medical professionals.  Thank you most sincerely.  Above all, I miss my sweetheart who visits me every single day.  We will go on  in mutual love and shared faith.  Karrie and I would not have pulled through thus far without our great, and I mean great sons, their wives and our grandkids.  We love you all.  Thanks to my brother Matt and wife Lillian for all the visits and caring, as well.   “I can do all things through Christ who gives me strength.”— Philippians 4:13  Dan Brooks (patient-online)