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.

Forced cleansing works

Forced cleansing must work because Dale reported he has not feel this good for a long long time. He did two days of chores all in one morning and still had energy to spare. Seven days of diarrhea must have taken all the toxins out of his system. He feels like a new person.

The diagnosis from tests and observations is diet control, i.e. low carbohydrates and no lactose for a month and check back with both his regular physician and the gastroenterologist for further checkups on the biopsies from the procedures.

I guess I need to finish off the ice cream, yogurts, milk, and cheeses all by myself.

Surprises that aren't really surprises

Dale has done relatively well and then, perhaps, it just seems that his bad health is normal. He is constantly plagued with diarrhea which precludes him doing much outside of the home. We carefully plan outings around when he eats and where bathrooms are located.  He has a quick exit bench week at church and knows where bathrooms are anywhere we go. Many times, as soon as we get home, Dale makes his way to the bathroom, just is time.  When he has a day of his situations, it exhausts him physically and emotionally. Fortunately, for both of us, he cleans up the bathrooms of the situations and does his own laundry--sometimes two or three times in a day. This behavior normally goes on for one to two days and then he is okay for three or four days.

This week it worsened. Vomiting added to several situations, laundry loads, and bathroom cleanups made it more complicated. Plus, this behavior continued four days with no relief in sight. Nothing would stay in one end or the other. He thought he may have C. Diff. (Clostridium Difficile Colitis)  which he had many times during the cancer year. After a visit to the ER, it was determined that it may be a good idea to keep him at hospital for more testing as he was clearly dehydrated and fatigued.

One night has turned into two nights/days so far. Tests determined it is not C. Diff.  Another test of the specimens are being completed now which takes time. Those results demanded one more night at hospital. I was with Dale for several hours today. Every hour there was another bout of diarrhea even though he had eaten very little. As he ate dinner, the nausea took over, he vomited and was in the bathroom within a few minutes. His innards gurgle and sputter. He is weak and discouraged.

It was not a surprise when it was determined he needed to stay for more tests, more observations, more data on his condition. It was not a surprise that it is not as simple as C. Diff. could have been. And it won't be a surprise if they say, they don't know what is going on. Dale has reported his diarrhea condition to each doctor he goes to. Each has given a pill to help. It hasn't. He has an appointment with his internist this week who was beginning to look a bit deeper into his condition. There will be plenty of new data for him now.

Four conditions

We traveled north to the Tetons. It was a good thing for us to do. First vacation with no agenda attached for many years. The travel was quiet and calm with minimal traffic. The ride together was good. Both of us had several moments of leaving-the-rest-of-the-world-behind and enjoyed each others company, the wonderful mountains, and the the fresh Spring surroundings.

Teton Mountains

I write this blog entry today to update health conditions. Dale reports fatigue, weakness, and overall not feeling well. The trip verified his inability to travel. We carefully planned eating around bathroom access and took frequent breaks. I enjoyed the beauty, he enjoyed the time to rest. I brought a book to read, but to my surprise, he wanted to play cards (something he normally detests!) We spent uneventful, quiet, relaxing time playing cards in the cabin with the rain pounding around us for a few hours. Nice!

Dale's diabetes seems to be causing discomfort. His digestive system is sensitive and even though they have tested and looked for causes of the constant diarrhea, they say nothing is wrong. He is working with physicians to determine healthcare plan for his back and neck pain. Pain shots seem to help but can't be injected as often as needed.

Four conditions: Fatigue, diabetes, digestive system, back/neck pain. But no cancer that we know of. However...he feels miserable most of the time.  His main exercise is the domestic chores around the house, which I soooo appreciate. Dale has become a creative culinary artisan. He needs frequent rests and paces his chores. He does more than he should health-wise, but emotionally-wise what he can do.

Receiving the Gift

Although Dale's last few days have been miserable, I feel spiritually fed and uplifted.  One night he was rechting from one end with horrible diarrhea and vomiting from the other all at the same time. Miserable, miserable.  Unfortunately, I have become accustomed to his nightly routine of sickening sounds and constant night bathroom walk-abouts. But that night was unusually miserably miserable. I got up and readied for a day of work, checked on him one more time before leaving for the day, and found that he was white, fragile, and scared. I stayed home with him, transported him to one of his doctor's appointments, and moved into the care-taker mode again. His needs and fears are great and reasonably so.

Dale's fragile whole body health waivers more so in the winter. Today is the winter solstice which means it is the last of the long nights. That is good. A neighbor suggested that Dale should get his lawn mower/snow blower out (no snow in the valley this year) because he seems to feel better when he can mow the lawn/clear the walks. We chuckled, but there is some truth to that. Dale's need of nature is mostly manifested in the Spring outdoors cleanups and summer yard work. He loves a well groomed and colorful yard. I am blessed with a comfort in knowing nature takes care of us as we take care of it.

Another neighbor gifted about 40 friends with a Christmas dinner in her home. Her husband passed away a few months ago, yet she gifted each of us with love, friendship, and the gift of the Light of Christ in this Christmas season. Dale was not present, however, the love and concern for his well being was deeply felt by me. I felt blessed to be among such caring neighbors.

Saturday, we spent a few hours at one of Dale's son's home with the grandchildren. Dale was able to maintain well enough to enjoy those great children. What a delight! These moments with grandchildren are cherished. I feel blessed in playing legos, reading letters, and admiring coloring skills with one, giggling with his sister while playing catch with her life-size doll, and teasing the little one with his big car.

Today, Sunday, I attended church without Dale. He feels better, but that is a relative statement. Better than Friday, not as good as Saturday, worse than Thursday, and not comfortable enough to be around many people (germs), wearing Sunday best (sitting a long ways away from a bathroom), and too weak (still white in color) to sit for a period of time. I had not been able to practice with the choir, however, was involuntarily volunteered to sing with them in today's production. I feel blessed for that experience of singing praises among choir members (and angels who sang with us) and thus, feeling filled with the love of the season with those who shared musical testimonies of Christmas Joy.

Later, I was asked to give the Christmas lesson to the women's auxiliary meeting. I shared Christmas Joy, Love, and the Gift of Christmas (#ShareTheGift). I feel blessed that I was given that opportunity to share Christmas with others.

I believe in the goodness of people. I believe as we care for one another, pray together and for each other, goodness happens.

I believe Dale's health miserableness is a residual of chemotherapy, winter depression, and unknown weakened medical conditions lingering within his organs. I believe his miserableness continues because there are lessons to learn, people to care about, gifts to give, and gifts to receive. I choose to receive those gifts with joy and love, as I have felt in the past several days.

Cancer is an obsession

Cancer is no respecter of anything or anyone. It creeps into a life, takes over, and becomes an obsessive soul of thought. A friend's remission is over. She was told they would work at extending her life 10, may 20 years, but "you may want to get your affairs in order." I, in my wisdom, began to listen to her concerns, but am obsessed with telling my story as it connected (or really disconnected) to her story. Yes, I listened, however, in the conversation, interjected my journey.

It is not my journey that counts for her. It is her journey.

I recall when people would tell me of their aunt, cousin, grandpa, spouse, child, or whomever, has or had cancer and included the details. It was a compassionate gesture, a connection, an attempt to give hope or understanding. I thought: "But our story is more important to us now. Thanks for sharing and making an attempt to give compassion to our story...but your story is not our story."

Listen. Answer questions if asked, but listen. Cancer is tough enough without the need to be socially correct in a conversation.

It is all about the cancer, the healing, the processing, the emotions, and the love for the cancer patient. It is not about me and my journey, it is about her and her journey.

Cancer is an obsession. Forgive me if I obsess about our journey, because as any (remission) cancer patient knows, cancer is an obsession.

Human body puzzle

The past several weeks brought an urgency to, once again, get things in order. To make sure decisions are made, talk with those that are loved, and prepare for the next steps of treatment. A few months ago, we were told that the cancer was back. With more tests, it was not back. Then because of the spots found in his lungs, told he probably had lung cancer. More tests showed he did not. A few weeks ago, Dale was told it looked like bladder cancer had been found. With more tests, there was no bladder cancer.

A roller coaster of emotions, preparing for some kind of invasive cancer killing treatment, plagued our minds. With each clarification of the initial diagnosis, a feeling of relief was clouded with feelings of frustration and confusion.

What do doctors know any way? Do they drum up more business/income by requesting more testing, and thus more doctor visits, referrals for followup appointments, and therefore more testing? The medical billing cycle is well oiled in healthcare.

However, without doctor's opinions in personal healthcare, treatment will not happen.

We were told with mantle cell lymphoma that Dale would do well for awhile and eventually his organs would have difficulty functioning properly. Partially due to the weakened immune system and partially due to the enormous amount of chemotherapy. At each diagnosis we were ready to begin the new phase of Dale's cancer treatment, whatever that meant. Then with each false diagnosis we felt that a few more months of life have been granted.

A cancer surviving friend told Dale today, he will never feel well again. Harsh statement. What hope is there in that? Yet, it also gives hope in why he never really feels well. I have written many times in the blog, we often forget the impact  and intensity of his treatment. We just want the "cold" or "flu" to be done and get back to "normal" again. Not going to happen.

Healthcare Puzzle

Summary: the human body is a puzzle. With all its variables, healthcare people do pretty well keeping the pieces working and fitting together. Critical pieces of the puzzle may be damaged or missing and with a team of healthcare physicians, new puzzle pieces are created (prosthetics), replaced (organ transplants), or cleansed (chemotherapy). The human body puzzle is complete, yet not quite as good as the original puzzle.

More tests, more answers

Dale is suffering with lots of pain this week. Headaches, leg aches and fatigue. It has been very difficult to get through the days. He does not feel that he can leave the house because of diarrhea, bladder pains, loss of balance, and occasional blurred vision.  Last week he saw a pulmonary specialist. She said it was better that he had the sarcoidosis throughout his body than if it was just in his lungs. She also noticed that it is in Dale's eyes and has scheduled a MRI next week for verification. That does not sound that good. Some days are better than others and this week--not so good. Hopefully with more tests there will be more answers.

He made it to another birthday Wednesday and was delighted to hear from the grandchildren, always a wonderful event.

Just moments to connect

Sarcoidosis. That is what it is. Especially all over his lungs. Another doctor will look at him in two weeks. Symptoms continue to overwhelm his well being. Shortness of breath, fatigue, depression/hopelessness, and pain.

And it does not help when he is told he will have little visitors and they don't show up. Excuses seemed weak and he feels neglected. He was excited and looked forward to a lively visit. He had plans to entertain and enjoy their time together.  He waited patiently all day until, finally, was told they would not come. Maybe another day. Makes me sad. He works very hard to keep those connections strong. Seems to be non-reciprocal. Dale thrives on visits, socializations, and people connections. I can't imagine what he must feel as he is alone daily as I go off to work and he can't do much of anything.

Makes me realize that people, everywhere, need connections. The elderly, the feeble, the lonely, the alone. Take time to be with others, even if it interferes with your day. People you know are worth it. You are worth the connection.

I need to work on this myself.

Personal visits are the best, but phone calls or handwritten letters/notes are also nice. It takes but a moment to connect. But especially, show up when you say you are going to show up.

They call me Doctor

Dale has good days and not so good days. Yesterday was not a good day. His timing is usually bad for my world. I was ready to drive the two hours on my own so I could defend my dissertation today without him. Kind of a big deal for me and he had a lousy day that could have prevented him coming.   Sometimes I feel that he carries the worries of life within his health conditions and sabotages my progress. Probably not true, but seems that way sometimes...

He did well today with health conditions and we enjoyed the analytical discussion of the dissertation. About three clarifying paragraphs and its done.

They call me Doctor.

Well done, in spite of all the distractions Dale has given me over the past several years.

It was a memorable experience. The study brought some passionate self-reflections from each of the committee members. Exactly what it was supposed to do. They did not ask question about my methods or research, they commented on their experiences, practices, and beliefs and its impact on others.

Good Job!

Gathering more data

Dale met with primary care physician today to discuss the latest results of the CT scan. The lumps have spread more abundantly: lungs, lymph nodes, and chest.  Dale will go to another specialist for more tests and information. This doctor is anxious to proceed to find what is going on. There is concern. There is a problem. More tests, more data, more time.

He had a minimal day today. Weak, belabored breathing, and pain. Loss of hope, anger, and frustration have set in again. We had three nice days thinking he was on the mend. Good to feel that once in awhile.

Insurance causes delays and the doctor has to battle the system to do what needs to be done. Frustrating!

Misery in check

One week has made a big difference in Dale's well being. Sun is shining, he has been out in the yard, and he is feeling much better. The virus must be on its last weeks. Energy level greater, pain less dominating, and cough has leveled. Nose bleeds, dry coughs, and fatigue are common now. No kidney stone pain, some breathing difficulty, and his back pain is becoming more of the issue rather than the virus symptoms. Progress. Attitude improvement.

This week is another CT scan. Still don't know what pulmonary physician wanted to tell him. Insurance did not want to support that appointment.

More to me

Kidney stones have shown their painful face once again. I came home from a stressful intensive day of work, run Dale errands, fix dinner, and spend the night in the ER with Dale. That answers his complaints for the past few days. They treated him as kindly as a frequent flyer and I just sit there, waiting. He eventually passed the stone and I was sent out to get prescriptions before the late pharmacy closed.  That pharmacy does not take our insurance. I was somewhat kind to the pharmacist, but could have been gentler. By the time I got back to the ER, the pain medication was absorbed and they could release him. Home. He slept. I slept-but now up ready for another day.

On the good side of the day...I was visited by a friend with a celebratory cake just for me. My academic accomplishments recognized and celebrated. Thank you. I thank you, graciously, because there is more of/to me than that caretaker role.

Medium weak/week

We got out of the house yesterday and enjoyed the pre spring blue sky day. It was good to do--for both of us. There is something about nature that heals the soul.

Dale's week was medium. He gained strength daily, yet his mind continued to fight the weakness he feels. Today he is pale, cold, and quiet. He is not well. Appetite medium, diarrhea high. Blood pressure high, pain medium high. Depression high. Hopelessness high. Balance low, strength low.

Many people ask about Dale's health and their thoughts, prayers, and kindness are felt and appreciated.