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.

Three more weeks of misery

Several days of weakness, coughing, vomits, and diarrhea do not make fun times. Dale continues to make it through a day, but is quite weak and in pain. The virus bumps on his shins and ankles have spread throughout his feet and cause pain. The one on his elbow ( I should have taken a picture-it was pretty ugly) is doing better. The bruising is yellowing and healing, but sore. This is a strange virus. The bumps are soft, hot, and painful. Dale's comfort level is low and he is too weak to do much at all.

Sunday was a good day. He was upright, dressed, downstairs, and conversed in sound conversations for several hours of the day. We felt he was doing better, however, Monday came.

He took himself to the doctor's for checkup. He was out and about for perhaps two hours, came home exhausted, and had to rest/sleep the rest of the day.

Hopefully, he is mostly done with this virus. Its been about 5 weeks of the said 6-8 weeks of healing. I suspect three more weeks of misery.

Early morning woes

Although we have an answer to the ongoing ailments, Dale's needs are intensive. Early yesterday morning, I heard a thud and found that Dale had passed out. He bumped the biopsy wound on his elbow, broke the stitches, and was bleeding. What a mess. Good Morning!!

It stopped bleeding enough to clean around the wound so I could bandage it. Later, we had the doctor look at it since it began bleeding again, had "heated up," and was painful. They cleaned it, examined and bandaged again. Should be fine.

I am tired.

I am not a nurse, but have to be one.

Not tuberculosis

It is not tuberculosis. It is erythema nodosum.

The bumps on Dale's arms and legs became troublesome and painful. They grew in new places and the discomfort and  pain increased. Off to the ER we go. The ER physician that remembers us was just leaving but came in to see us anyway. He looked at the bumps and made a diagnosis he shared with the incoming ER physician, who added in more information, and then called Huntsman Hospital's hematologist for further care. Huntsman said, "Come on in!" After all, Dale has had issues for several weeks and there have not been answers.

Dale was given a room in the BMT (bone marrow transplant) wing which gave me the indication that he needed a sterile room. When the University sent the infectious disease doctor in, tuberculosis was being ruled out. He has many of the same symptoms. With his compromised immune system, Dale is susceptible to infections most of us are vaccinated for.

There were teams of doctors and doctors-in-the-making checking on Dale, as erythema nodosum is rare. His stay was less than 24 hours, but they found the answer.  Another biopsy of one the larger bumps on his elbow was taken. It is likely to be the same as the lung biopsy mass was, just on his shins, ankles, and forearms.

When they took the biopsies in the lungs, the erythema nodosum began to develop, a side affect. No treatment, just occasional ibuprofen. Dale will have painful joints, fevers, and will feel sick for 2 to 8 weeks. Weakness and other flu-like symptoms will continue.

An answer to the last several weeks.

2:45 AM Room window view, when Dale was admitted.

Rest is best

Antibiotics have one more day to magically work. Then what? Dale's red eyes turned pink for the weekend, and are slightly whiter today. Weakness, shortness in breath, loss of appetite. Loss of hope. Sick and tired of being sick and tired. Coughing has its intensive moments, but a calm from coughing is increasing. Diarrhea is back. I believe he needs a weekly follow up with primary care physician for several weeks at least. Next one is Wednesday. Lumps on arms and legs are increasing, which I believe is a cancer--a foreign object out of control. Maybe not cancerous, but a cancer, nevertheless.

Dale is doing all he can to maintain through a day. Rest is best.

Bad news today of a good friend's wife. Her cancer has come back after about 10 years of remission. Radiation and chemo, and fast. My heart sank when I heard about it this morning :( They have a young family who need both Mom and Dad.  Cancer is cruel.

Pneumonia coughs

I was right. Dale was sent home from hospital yesterday with prescriptions of antibiotics and orders to rest. His persistent cough is annoying for both of us. He coughs & spits frequently. His blood pressure and temperature increases during the coughing spells. That can't be good on his total well-being. He complained of chilling, but was in the basement where it is colder, so I gave him another blanket layer, which seemed to help. His energy level is low, balance is off, and he is faintish.

Appetite is minimal and if he does eat, nausea sets in and he feels he will vomit. A pan for spit and vomit surround him. Liter bottles of fluids are within reach. Washable towels lay besides him and the TV remote is in his hand. Should be fine for the day.

It is lousy being sick.

The Hospitalists

Appointment with primary care doctor was quick. He listened and asked questions. He prescribed updated blood labs, chest x-rays, and antibiotic infusion for next several days. He understands Dale's fragile health history and wants to prevent pneumonia from taking over. 

Unfortunately. It already had done so.

By the time we left doctor's office and began blood labs, about 15 minutes, his temperature began to rise. Then on to radiology and his temperature felt warmer. By the time we were in the infusion room, nurse took temperature, called his doctor, and they determined he should go to the ER for respiratory treatments, antibiotics, hydration, and probably admission to hospital. By then they found the pneumonia. 

ER took more blood culture samples for infections. Respiratory treatments had to be done twice and they put hydration and antibiotics into his veins. 

In the next couple of hours, the hospital had to decide if he really needed to stay or not. Outpatient care for pneumonia seems to be the popular insurance's coverage request now. 

Apparently, doctors have to submit patient information to a "Hospitalist" panel of physicians for review and admissions. Primary care and ER physicians don't have the authority to do so any more. That took a couple of hours. 

I suspect, he will get the medications this morning, they will see he is doing okay, and send him home as outpatient. When he is home constant care and transportation for treatments is necessary.

Dale's reflection in hospital room window.

Nothing looked good

Dale did not progress well enough, in my mind, through the day Monday, so off to the ER we went. Insta-care places will not service him because of his cancer history. We had visited the ER one week ago for another acute health condition and the ER physician recognized us and Dale's health history, which says much about the doctor and the ER. 

Eight hours later, they sent us home with an oxygen tank and eye drops. Not pneumonia, yet. Go to your primary care for follow-up. That is what we are doing today. 

I am emotionally exhausted, and physically beat. I worked yesterday on 2 hours of sleep with no down time, (if I stopped, I probably would not be able to get going again) picked up a prescription for Dale, and wondered around the store for 15 minutes trying to find something for dinner. My mind was not able to function and make a plan. All I knew, dinner would have to require minimal effort in preparation. Nothing looked good. I found a prepared dinner that seemed reasonable and headed safely home. 

Bedtime for me was 5:00 PM. But I had to stay up another 1 1/2 hours, because the dinner needed that long to cook.  

The emotional roller coaster is on the rise again.

Cancer may not be the greatest concern here. Look at that pathetic face! 

Dale has been sick with something for over 10 days now. One night-morning in the ER did nothing but confirm, yes, you aren't well. Get some rest and drink plenty of fluids. Dale coughs all day and night spitting yucky stuff. He is weak, nauseated, and miserable. He fevers occasionally and chills frequently. He reports that his joints ache and his body is in pain most of the time. The lumps on his arms and legs are returning. Depression setting in. 

The only explanation I can come up with is that Dale's immune system was not so great before bone marrow transfer, and now it is even weaker. A cold will last several months with him. This flu/cold/pink-eye??? will also last several months with him. 

The emotional roller coaster is on the rise again.

Emotional roller coaster is slowing

Fortunately, biopsy results turned out good. The spots/growths/foreign objects/whatever-they-are in Dale's lungs are not cancerous at this time. Come back in three months, let's look at them again. Hopefully, they say, no growth or significant changes will happen. Okay. (What else can be said?)

Unfortunately, Dale found some tumors or more of the spots/growths/foreign objects/whatever-they-are in his arms and legs. Primary physician was very concerned and put him on antibiotics and to come back in a week.

Fortunately, Dale is feeling much better.

Unfortunately, our military insurance, is weakened by ObamaCare.

Fortunately, emotional roller coaster is slowing.

Down hill slope

We have no results of biopsies from four days ago. A weekend and federal holiday do not help the time tables for us in finding out the results. Dale complains of many aches in his joints and overall body, he has difficulty breathing, and his energy is getting lower.  Dale thought he might have a circulation problem because of his weakened limbs. When he was told there might be lung issues, it made sense to him in that the oxygen may not be getting to his limbs as it should. But that is still a guess. Dale has complained about his weakened and painful limbs and so far, physician have not paid particular attention to his concerns. He is discouraged and wants to know what is causing his quick demise. He describes feeling worse each day. I see that his skin color is pale, his breathing belabored, and his discouragement high. I am helpless in diagnosing what to do next or how to make him less discouraged.

Chills and fevers

Chills and slight fevers did not dominate the day, but did manifest themselves a few times last night and today. Weakness turned into restlessness so Dale walked around the house for some exercise for the day. Appetite was okay but turned into nausea (I don't think nausea was caused by my cooking). A nurse called checking on Dale's condition and confirmed all the symptoms he had which will probably continue at least one more day. Glad I can stay with him a few days as the weekend begins.

No other news or results on biopsy.

Scope and biopsy

Another day of testing. Pulmonary oncologist did a scope and found many lymphocytes for biopsy samples. Details of results will take a few days. I suspect early next week. During the procedure, Dale was supposed to be in the "twilight" stage of awareness, however, the nurse had to wake him up a few times. She seemed concerned when she told me. The recovery day has been iffy. Pain. Coughing. Pain. Coughing. Panic. Coughing. Pain. Coughing. Panic. He chilled and then heated up for moment, but is doing better now. I am apprehensive about the night time. Hopefully, he will rest well, which means I will too.

We both have been sustained by our good friends around us. Thank you.

Emotional exhaustion

We are both emotionally exhausted. Our minds are functioning at about 43% of our normal capacity. The stress of anticipation takes over thoughts. Reflections of chemotherapy, emergency room visits, blood & platelet transfusions, and injections float in our brains. This is not an easy ride. Do we have to do it again? Don't know.

The pulmonary oncologist will see Dale tomorrow. They work efficiently there so the results should be available in a day or two. More answers will be good.

We want to thank all of our friends we are connected with, known and unknown, thank you. Thank you for sustaining us.  Your care and prayers are felt.

Delayed doom

Minimal news to report, however, minimal is a good thing. We both anticipated doom and had feelings of "here we go again. We've done it before, we can do it again if we have to." A long ride on the emotional roller-coaster of medical treatments, trips to ER, needles, sickness, tubes and bags of chemo, blood tests, calling the nurses early every morning checking if he made it through the night, and so on.

Mantle Cell Lymphoma is not present. She curbed the doom, with blood results in great ranges and other indicator in check. Lymphocytes seem to be okay, although one is slightly enlarged but not alarming to doctor.

Dale's main oncologist is consulting with pulmonary oncologist for in depth analysis of the growth on the lung. Several scenarios were presented, but we don't have enough information to say what step is next.

Sleep well tonight.

Bucket list

Friday, we received the cancer message. Saturday, Dale was able to spend a wonderful day with his daughter and her family. Sunday, Dale spoke to many caring friends. Monday, coughing, body pains, fatigue, and signs of hopelessness. Tomorrow, first appointment with cancer doctors.

I received much needed caring support and prayers from "old" friends and new friends.

Bucket list of things to get done before.....being created.

The journey begins again

Dale made the 2 year mark last Sunday. But not really. It's back.  A lump was found in one lung that has more than doubled since July.  December 30, 2013, he had a CT scan. His primary care physician called Wednesday, January 8, 2014 to set up an appointment with him as soon as possible. Today Dale found that mantle cell lymphoma is back.

We anticipated this day to come for a few weeks. He "looks good" but is not well. He has really bad days and other days are okay. He paces himself and is able to do his tasks, but he tires quickly. We do not know what is next. Appointment was already scheduled for next week at Huntsman Cancer Hospital as the quarterly checkup. Now they will do more tests and let us know prognosis and treatment.

The journey begins.