it could be worse, or maybe it is

 The next colonoscopy is scheduled for December and Dale anticipates that they will need to have the surgery the next month to take out some of it. He is always having bowel problems which could be part of that story. It is good to check him as often as necessary. Keeps things manageable.

Other symptoms are summarized with his VA doctor this week as Parkinson's disease. Makes sense, actually. His tremors have increased and ongoing, he thrashes around at night, talks in his sleep, and acts them out. He has sudden jerks frequently at night, he walks with a shuffle and balance is getting worse. He complains of dizziness and feels that he will faint. He always needs a shopping cart whether he needs it to carry items or for the balance help is debatable. Fatigue and the sweats can be part of it, but the anxieties are another symptom. 

Dale's attitude is calm and accepting at this point. Mine not so much as I read about the caretaking roles--it is the definition of long suffering. 

Gear it up.  

Get ready.

 

What's up?

A month and a half ago, Dale had his colonoscopy and endoscopy. He had an unusually high amount of polyps in one area of the colon. Biopsy did not indicate any cancers at this time, however, they tattooed the section in the colon for the next one for better information. His hiatal hernia is not repairable and he is now on the every three months plan. He says he is excessively tired and has night sweats. The only symptoms we knew of BEFORE. He continues with stomach issues and diarrhea all the time. Situations, 2 or three a week sometimes. 

Hopefully, it is just digestive issues and not Mantle Cell Lymphoma. 

The world is in a mess right now with COVID and social unrest. We are distancing and masking all the time. Me at work (students are supposed to come back at last report) and Dale at COSTCO. That's about as far away from home he goes. And my hands are raw from washing so much. All is good. We are doing fine in the COVID world. 

Life is precious and fragile. Take care of each other. 

It is always there

I was asked about the cancer experience today. I thought I'd be fine to answer.

And then, I remembered.
And feel.
And it comes back.

The feelings are raw. The experience was real. The changes in our lives are constant. We work to live each day to its fullest. Some days more full than others just because of Dale's inability to do. So far this year alone, his infections of some sorts is counted at four times. Each infection in not very convenient places.

As I reflect on 2011-2012, the cancer year, I continue to feel those fragile emotions. I remember calling Huntsman Cancer Institute early each morning checking if Dale was still alive or not. How did he do through the night since I left him the evening before? I remember when he passed out on the gurney and the nurses worked to "bring him back." I remember driving in the middle of the night/morning to the ER for checks and end of driving home alone. I remember seeing him so sick, he'd just stare at nothing. I remember believing he would not make it to bone marrow transplant.

And since that year, we adjust, adapt, and arrange our daily life to match Dale's capabilities. He is slower, has less energy, and infection prone. "Situations" happen almost weekly and his life circle space is getting smaller all the time. Venturing outside of that circle is difficult for him--physically and emotionally.

There are days I wonder when I come home if he is splat on the floor somewhere in the house, helpless or worse.

We have done well, however, it is always there.

(Sick feeling + Pain)(Unanswered diagnosis) = (Anger + Regrets) - Love

Dale has felt horrible for many months. Some days worse than others.  Although he continually goes to various doctors and discusses his symptoms, he has no answers and there is no relief. He complains of leg and muscle pain, severe headaches, fatigue, dizziness, weakness, pain everywhere, and chronic coughing. He has claimed many times that he fears this is his last year, "...something is going on and they aren't listening to me!" He has suicidal thoughts.

He has stayed in bed for the past several days, getting out of the house for minimal moments of time. One was a doctor's appointment. Blood work and x-rays were taken, however, as he was traveling from one floor to the next for the tests, he got stuck in the elevator for 45 minutes. Then. later that day, they called him telling him that his blood had gotten lost and he needed to come hack to give them more.

No wonder he stays in bed.

This gives him time to think and reflect on life and its dealings. He constantly reminds himself of the negative experiences of life and therefore relives the anguish of each incident. Is that what one does who believes their life is nearing its end? And I, apparently, am the cause of much grief. There is nothing that I can do that is correct. The same breakfast we have all the time has become suddenly disfavored. I took out the garden weeds incorrectly. I attempted to clean the floors, but incorrectly, so he did so. He says he may as well sell the home and give it to a niece and her husband. May as well, he says. "What's the point any more?" he says. I suppose he believes I am a helpless-extravagant-flippant-user and unable to make decisions.

Is this how depression rules one's mind? All is lost, all is forlorn, all is worthless. I  struggle to know what to do, how to help, how not to exasperate it more.

Today it got bad enough Dale determined it was time to go to the ER. What they are able to do beyond what doctor's have already attempted to do for him, I am not sure. They analyzed his suicidal thoughts and gave him ibuprofen for the headache (I suggested he take some at home--but was refused). It helped. They found nothing unusual health-wise and sent us home over four hours later.

What does this all mean? Dale is in miserable pain and suffering from something. He is not getting answers that he needs to receive. He feels horrible and its getting old.

However, I hope he noticed that our walks and steps were shoveled clear of the fresh snow by kind neighbors, one over 70 and the other 12 years old. I hope he noticed the Glitter box left on our front porch with a get well message inside the box. I hope he feels the many prayers and thoughts of goodness that are sent his way.  I hope he knows that, I too, am part of this home. I hope he knows that we can do this together.

My answer to the above formula is: (Forgive + Forget quickly) / (Love + Patience)(Endure to the end) = (Hope + Understanding)(This-Too-Shall-Pass). Combining like terms and you end up with (Forgive + Forget Quickly).  That is what I do.

Dale, Dale, Dale

Dale just can't keep out of trouble in the health care world. For many weeks he has complained about headaches, multiple sinus infections, nose bleeds, and constant fatigue. He was given a nasal flush system several weeks ago which he faithfully uses, yet, the condition worsens. Yesterday, his temperature rose to 100.8° and his nose was swollen, red and feverish with immense pain. His balance was off, minimal energy, and a bit out of touch with reality.

Off we go to hospital.

Swollen eyes, nose and face, much improved from hours before photo. 

His temperature and pain levels have fluctuated through the night and day, up and down, then up again. His skin was pale and thin and did not retain normal colors until several hours of medications. His nose, face, and eyes have swollen. The nurse reported that his eyes look much better by the time the picture was taken. He doesn't look good to me. Feverish, clammy, and hurting.

They did x-rays for kidney and liver infections, blood and nasal cultures. So far, the only determination is that it is not a viral infection. The CT scan shows a lot of sinus blockage. After some pain medication, antibiotics, and eventually steroids, he will need to see an ENT for further investigation of the cause and the next step. I suspect there is a surgery in the near future.

The ER treated Dale aggressively as he is still prone to infections and other ailments. White blood counts are high--indicating infection, someplace. Tonight will be the second night of hospital stay. Hopefully, he will home tomorrow--he has chores to do around the home:)

Mantle Cell Lymphoma Residual Issues

This week Dale was given the OK to upgrade from the 6th month cancer checkup to the once a year cancer check up. Five years and two months since bone marrow transplant and it is looking as good as it should at this time.

However;

Dale needed another colonoscopy in the first week of January this year due to symptoms and issues he continues to have. And yes, it was good he did so even if his previous one was about 18 months ago, and was "clean." Numerous suspicious polyps were found (doctor quit counting them). Besides the number of them, there were no other issues with the numerous polyps. Doctor told him it would be best to have another colonoscopy annually.

Since January, Dale has been light headed, weak, felt numbness in his legs and chest pains. After a CT scan it was discovered that the lower left quadrant of his heart had some blockage. He was scheduled for the stress test this week.

However;

Saturday, breathing, sweating, numbness, and chest pains took him to the ER; who, after much deliberation, transported him to hospital for observations, heart and oxygen monitoring.  Monday the stress test will be given and perhaps more information will be discovered. Perhaps a stint will be inserted. I know nothing more.

However;

The cancer doctor told him as she looked over the many doctor visits Dale had in the previous six months after she saw him last, that although the mantle cell looks good, the rest of his body is high risk for issues. And it would be best to continue to work with the cardiologist, urologist, and have the colonoscopy at least annually.

However;

Life is still good to us. We have good people around that assist and support. We can do this.

CELEBRATE the LIGHT

A few weeks ago, doctors modified Dale's diet by excluding milk products and gluten. He has lost over 30 pounds and feeling much better. Who knew? Such a simple change making a huge change in Dale's overall health conditions. Simple??? Milk, cream, cheese, wheat, breads, pasta, and breading is everywhere. Gone. And we had just purchased Tillamook cheeses and Ritz crackers! So I take those to work and have one slice of cheese and 4 Ritz crackers for lunch. I may as well go on the same restrictive diet as it is healthy eating and in the meantime, gently finish off what we do have of the forbidden foods. The things we spouses do for each other!

In the meantime, I have a need to CELEBRATE the LIGHT I feel. Dale and I now look at our marriage as before Cancer, CANCER, and after Cancer. Since 2011 at diagnosis, life has been pretty tough with not only cancer but life and its many challenges. Some challenges directly related to cancer, others not.

During CANCER, we made it through with many, many people supporting us. We sold a home, built another, sold it and sold another, blending both homes into one and moved into our new home eight houses down the street.  We've completed the basement in the new home and decluttered the yard (taking out about 7 trees and 12 shrubs) and fine tuned other landscape pieces ( I did much of the work under Dale's imaginative & creative directions and supervision). Dale's fragile health forced him to retire. I completed my dissertation--slowed down during CANCER, but still completed it. It is a good study and if the reader wants to read it, send me a message and I will reply with a direct link to the study as it is published online.  My work conditions turned from united supportive colleagues to oppressed strangers when I was transferred to a new setting. Almost two years ago, we were told that CANCER was back and we geared up for several hospital stays. Fortunately, it was not cancer and explained in previous blog postings.

Other fragile health issues have continued through the months of after Cancer. Dale has maintained reasonable health (especially with new diet restrictions), completes what chores around our home as he can and has completed over 250,000 names in the indexing system for genealogy purposes. He is a volunteer for a church supported employment center and also volunteers at the VA. His good days are increasing as the bad days decrease.

I did not realize the depth of my own oppression until a new leadership team was formed. A few weeks ago, I pondered my life and felt joy. A joy I have not known for a few years.  During CANCER, survival comes to mind. I was reminded of my neglected hair styles during CANCER and now after Cancer even my hair style is updated and cared for.  After Cancer gives me a focus on life's blessings and hardships blended into what we call challenges. We have done hard things and we are okay. There is reason to CELEBRATE the LIGHT I feel. And perhaps I would not know the magnitude of that joy without the blessings and hardships called CANCER.

Perhaps it is the season. The LIGHT shines bright within our home with seasonal lights, displayed nativity scenes, and sparkling lights twinkle on the tree and front porch trimmings. The cold crisp winter air, sun glistening on snow topped mountains, and snow storm forecasted for the week brings me into a cozy feeling of chestnuts roasting on an open fire....I feel the joy of the Christmas Season with a deeper understanding of the LIGHT and #ASAVIORISBORN. We can and have done many hard things. The joy is known once again.