Big red truck

Happy Remission!

Cancer remission brings interesting perspective on many things, especially when two friends diagnosed and treated within the same few of Dale's diagnosis have already passed away. Another, one year ahead of Dale, also passed away a few months ago. Each had very similar (lymphoma) if not the very same (mantle cell lymphoma) cancer. Dale wants to do what is right, get things in order, and be a productive, happy man. So....on Black Friday, he left the house for a few hours, returning with a great big 4-wheel drive, red extended cab, truck--which barely fits inside the garage. It really is a beautiful vehicle and he feels better. Must be a man thing. However, when he took the car in that I wrecked on his first day of chemotherapy, he had an emotional detachment period. Driving the truck helps him get over it though.

Today is day Day 330 of bone marrow transplant. Still going strong, although he has a cold--enough to work from home for the third day.

Better days are coming

Dale had his quarterly blood work and check up this week. Report is good. Blood is progressing well and it looks good. They scheduled CT and PET scans again in a couple of weeks to keep ahead in case mantle cell lymphoma sneaks back. They told him the first two years past bone marrow transplant and chemotherapy is most critical time, so the CT and PET scans are to catch anything unusual early enough to treat it. He still continues with diarrhea problems and does not really know what to do to curb the urgent needs.  Stress never helps. He is a pretty good sport and looks forward to better days ahead, AKA, retirement.

Steam cleaners

Things have gone well lately. Dale has worked longer days more frequently, energy level increasing, and sense of wellness stabilizing. It is as though last year did not really happen, except we know it did. Our memory of events is vague until someone or something brings it to the front. Strange how the mind protects itself when necessary. Yesterday, day 300 since bone marrow transplant. Almost one year.

However, Dale still has situations occasionally. Usually at home but sometimes elsewhere. Once I got home yesterday, I knew something was amiss: laundry going, smell, and Dale more than his normal exhaustion. Twice. Once at work, another as soon as he arrived home. I am grateful to the steam floor cleaner we have. Works nicely, especially on the wood floors.

I don't know the causes of the ongoing diarrhea, other than the chemo reactions. It does not seem to be sensitive to a particular food. I believe the mantle cell lymphoma treatment further weakened his digestive system. I do not think the cancer is back, yet. They say 3-5 years and it will return. For now, we are about 65% of our normal lives. I am even making progress on dissertation proposal. Just the other day, as I continued on with my day of crazy work, I thought to myself that I finally felt that I am functioning at about 85%. Still more to go, but much, much better.

Harping doesn't work

Last week Dale told me he felt better, his energy slightly increased, and closer to normal although not there yet. Unfortunately, there are many responsibilities at work that demand his presence. Recovery time between work days may become somewhat limiting. He will need to rest as much as possible to do what he needs to do. I will have to quit harping at him to do stuff! I mean, after all, he looks fine!

Dale has situations at least once a day now so daily laundry loads have begun. The tests said there was some inflammation but nothing to be concerned about. My take is the chemo and bed rest killed off acids and muscle he needs to control, but what do I know?

In trouble at work

He is doing okay. Dale has good days, and not so good days. The last few days--good. Makes it sooo much easier on me. He put in almost a whole day of work today and got in trouble with his boss for being there as late as he was. Good for her for keeping him in line. It takes a whole city to take care of Dale! I appreciate the assistance. Recovery time mentally and physically is needed and appreciated. Thank you again, Dale's work people! He needs social interactions at work and I need Dale's mental well-being in tact. Thank you, thank you for knowing his needs.  

One way to get good rest

Dale's Upper GI Endoscopy tests on Friday, looked fine. Doctor took biopsies for more information but said nothing looked unusual. Dale told me he enjoyed the good rest he had while the procedure was completed, however, a bit expensive...

Energy level remains low.  Feelings of non-productivity and depression increase. One more day, one more test completed. He wants to give up, not wake up, and be done. His mortality may be earlier than he hoped for before cancer diagnosis and treatment, but it is not as fast as he seems to want it to be. Sad that he feels this way. Each day of life brings another opportunity to learn, serve, and become a better person. Dale, does not see it that way now. His focus, energy, and purpose has diminished. Sad because we have many reasons to be grateful each day.

PET Scan Results :)

Test results found nothing significant, however, they are ordering a GI specialty test for Dale. His digestive system does not do well, therefore, diarrhea and nausea, continue. It is good news. He seems to feel relieved, yet wants to feel better.

Waiting for PET scan results

After a run around with insurance and who actually has the equipment to perform a PET scan, Dale was able to get it done yesterday morning. We do not know results. He said the technician gave him no indications of problems, but they aren't supposed to say anything, radiologist is supposed to report to his doctor and she will tell him what is next. Dale manages 5-6 hours of work, comes home, and tries to recover for the next day. He sleeps pretty well mostly--why do I know? Because I don't. Dale continues to have situations a couple times a week, needing extra laundry loads. Depression seems to prevail much of the day. Understandable. His mind must be swimming in possible scenarios. I work hard to support and be understanding.

Coworkers that care

Dale attempted to go to work on Friday--well--he got there safely anyway. Coworkers brought him home a couple of hours into the morning. A 100 mile round trip for two of them indicates to me that Dale became pretty sick (vomiting included) with continued weaknesses shining through on the job. The coworkers tuned into his needs and brought him home. Thank you to them. What comes first? Not feeling well enough to do anything, or not doing anything, therefore, not feeling well? Saturday, Dale repeated the same (vomiting with extreme fatigue) while at the grocery store, so we quickly ended the shopping, drove home, where he stayed with the remote all day long.

Dale tries to get to work, however, in the last three weeks, has not been strong enough to do so very often. Driving in his weakened state, is not a good idea, therefore, he works from home as best he can with computer communications, although not the same, works okay for now.

Insurance okayed the PET scan at a hospital just a couple minutes away. Hopefully, they will schedule him quickly, send information to his cancer doctor, and we will have an answer. In the mean-time, hang in there, Dale.

Is remission from mantle cell lymphoma over, or is there another cancer brewing inside him somewhere? Or what!?

Infant-like immune system

Someone at Dale's work contacted whooping cough. Highly contagious and he should stay away from it.  He felt horrible enough that we took a trip to ER last night. The doctor listened to symptoms and the history and had many tests done including those for meningitis, pneumonia, and whooping cough. As I waited and waited in the ER, I looked up symptoms, causes, and treatment of each (sans pneumonia). Meningitis and whooping cough are problems for infants whose immune system is young and not immunized. Hmmm. Dale is less than a year old--bone marrow-wise. In fact, day 238 since the bone marrow transplant.  Yes, he has symptoms of both, however, it turned out that he at least has a sinus infection and anti-biotics will do the trick. He feels better today already. Hallelujah!

Cough! Cough! Cough!

The cough lingers on and on. Dale continues to battle with coughing episodes. Although he hates winter, when the snow flies there are minimal allergies in the air and it may be better on him. Energy level is partial. He went to work today from 5 AM to 10 AM (which happens to be 5 hours), came home and worked from home for awhile, and went to bed at 7 PM. Considering his driving, he worked 7 hours until he began work at home. He reported "hitting the wall" again and is down for the night. Depending on what kind of rest he gets determines if he will go to work in the morning. His coloring is somewhat pale and he has dark circles around the eyes, therefore, I know he feels lousy.

Get Some Exercise!

In my care taking mode, I decided to make Dale go to Huntsman for blood work and consultation with his doctor since he complains of increased fatigue, nausea, and night sweats. Good news: blood looks good, no viral infection, and probably allergies cause his coughs. More news, they will schedule a PET scan to validate that organs (i.e. stomach and digestive system) don't need treatment. Validation news: get some exercise to build stamina.

Increased fatigue

Unfortunately, I have more to report this week as Dale continues to exist day to day. Fatigue continues to increase as do night sweats. I think his cough is an annoyance but not the cause of all discomforts. He had b-cell blood work a few weeks ago with his regular physician along with the blood checks for diabetes, although no significant changes were made. Originally, fatigue was the only sign Dale had that something was wrong. It continues beyond the anemia diagnosis. Dale's complaints of bones hurting makes sense to me in that his bone marrow is compromised and falls short in generating enough blood to keep him out of anemia danger. I guess we just work through each day until appointment with cancer doctor in a few weeks.

I have turned on the caretaker mindset once again.

Anemia

Dale took himself to ER yesterday. Anemia and viral infection. Bone marrow not producing enough red blood cells and a weakened immunity. He takes a viral antibiotic already--although he forgets to take it sometimes, and he needs to eat healthy. Nothing new and part of the recovery time. On we go.

Fatigue

Dale looks good. Skin coloring healthy, hair seems to be fuller with less graying, and sense of humor growing. Inside, though, he is extremely tired. He reports it is difficult to get out of chairs, walk, and other simple moves. He slept all day yesterday, got up for dinner with friends, maintaining as best he could, and went to bed when we returned home. Another day of sleep today indicates a downhill sign. He does not like to miss work, however, does not have enough strength to make it in. He continues to fight a cough. We thought maybe pneumonia set in, however, x-rays had no indication of such. The next cancer doctor appointment is in one month. If remission is over, so be it.

Today is my birthday. Just another day. Happy Birthday, me!

Daily pace

I was out of town for a conference this week. When I came home, Dale was asleep and hardly noticed me. I could tell by the way our home had extra clutter and unfinished tasks around that he barely made it through each day. He says he is okay, however, sleeping for twelve hours and still being tired is not a good sign. The cancer doctor appointment is in about four weeks. If remission is over, we will know then. I do not have any feelings of what is going on, other than, Dale is doing the best he can to be productive each day but cannot keep up with the daily pace.

One year ago

 One year ago-chemotherapy; Last Friday-Zion National Park

One year ago Dale received his first round of chemotherapy, I got in a car wreck on the way home from the hospital, several months of treatments began, we learned about cancer, medical procedures, and the kindness of many friends. This picture was taken in Zion National Park while we explored one of the walks. It was a beautiful day, temperature mild, and wonderful nature scenes. We realized it was the one year mark of Dale's first day of treatment. I like this activity better and I did not wreck anything on the way home. The next chapter begins.

Tired days

Day 190 was last Thursday. Generally, Dale goes from day to day okay. He needs much rest and feels "just not right" although he continues to make it through each day. Sleep does not give rest but Dale gets up, goes to work, comes home, and unless he has a social event or obligation of some sort planned, he is done for the day. His work provided him with a laptop to bring home and continue working when he needs to. I hope he will take advantage of that benefit because he is exhausted each day. Last week's colonoscopy brought no surprises, yet. Biospies will be in probably next week. I hope remission continues. Dale says he feels as tired as he did before diagnosis.

Gloves

Good thing Dale's colonoscopy is next week. The issues are still present. Had to get the gloves out, turn fans on, and clean up the results. Dale reports constant problems in the digestive system and fears there will be more treatments of some kind. He is incredibly fatigued most of the time, however, he manages to make it through each day. Last night was the first night he actually slept most of the night. His lungs must be full of the smoked air from the excessive fires in the state because his raspy voice is constant. Breathing, digestive, and fatigue issues consume his health conditions.

Trouble ahead

We are in trouble. I feel that Dale should have whatever he wants since he made it through over 1300 hours of chemotherapy with grace (sans constant diarrhea) and survived it. He thinks I should have anything I want since I managed EVERYTHING so well. Now what? Should be easy, since we "want" similar things, however, it takes away those passionate discussions we used to have convincing one another in wanting the same things. So be it for communication skill development. Surviving cancer brings unpredictable changes in relationships.

Tired news brings good news

Being tired gets old quickly. Dale gets up every day, very early, heads off to work (about a 45 minute drive in the early morning hours) works a 9 hour day, and returns with at least an hour drive home in the afternoon. That, in itself, makes any one tired, however, one in remission of mantle cell lymphoma, it is remarkable. He typically comes home, slightly hungry, exhausted, and ready to unwind and be done with the day. It is very common for Dale to retire by 6:30 or 7:30. This means his need for physical recovery is greater than previously. We know he has aged quickly this past year and I am sure that plays into his fatigue.

The good news: because Dale retires so early and I need it quiet to study, I do. I read, think, write, analyze, outline, re-read, edit, and research a couple hours frequently now. I just may get this proposal done this summer.

Pondering the blessings

Dale made it through 4 days of work without much harm. His worst is at night with a cough keeping both of us awake. He sleeps part of the night but coughs the rest. Lack of good rest contributes to his overall fatigue.

Dale reports that people are happy to see him and even a bit surprised at how "good" he looks...if they only knew how bad he looked (and felt) for several months...he'd look even better. But what does one say when someone comes back after a long time away with a traumatic time separator? "You look good!" works very well.

Friends continue to inquire about his wellness and progress and I tell them happy news: successful bone marrow transplant, clearing mind, completion of treatment, remission, back to work, and so on. One friend asked me the question and was grateful for the progress and forward thinking. His wife has alzheimer's. Where is the remission in alzheimer's? That is a tough one. We feel blessed we have the remission stage now. However long it is, we are grateful to have it.

Another friend told me reading the blog has "changed her life." I am glad our experiences in this journey has brought thoughts, pondering, and blessings to others who happen to read it. I am convinced that journalling brings individual values to the writer, but to the readers also. Thank you to all that read and join us in life changing ponderings.

Working Dale

Dale's first day back to work went well. He met with many surprised co-workers welcoming him to the work grind of every day jobs. He has a new supervisor who Dale says is very good which made Dale feel more comfortable about being there. Now retraining and catching up on the daily responsibilities of the job. He will be fine. Dale loves to be with people and I think he is ready physically also.

Back to work today

Back to work

Dale was up early, got ready, and packed up hand sanitizer, bleach wipes, and surgical masks for his return to work. It is great he is able to go to work, yet his recovery still needs time. We made the statement last night, that although cancer is in remission, the aging process has quickened. Still many things to consider as he gets out into the world again. His compromised immune system picks up unwanted bacteria and germs easily. He suffers through a cold he picked up this week and it takes extra time for him to get over it. It is day 152 since bone marrow transplant.

Mantle cell lymphoma remission continues

We are continued to be blessed by many around us. Last night a group of youth assisted with window washing and weeding. Although we have not been with this group for over a year, several consistently stop by. We appreciate the friendships. The days bring more health to Dale. He completes many projects he sets for himself and able to get ready for the next. He rests frequently, although, seems to recover more quickly.

Doctor visit today went well enough that he does not need to go in again until September. She is letting him go to a dentist, go back to work, and be as active as he thinks he can handle. He needs to be wise in infectious potential situations so he will don his surgical mask occasionally. Work begins on Monday. I do not know his plans on how much of a day he will be able to handle, however, I do know he will need resting periods and planned eating times. Dale's mind is clear and productive--the "chemo-brain" subsides.  The next stage of the mantle cell lymphoma journey is about to begin.

Flowers for life ahead

It is good to see Dale progressing each day for the better. He feels healthier each day, diarrhea in check (still some issues, but better), energy increasing, and his mind is clearing. Returning to work in a few weeks brings on the next chapter of unknowns. I think he will be fine as he adjusts to his work mode again. He will need time to update his mind, stamina, and schedule but I believe work for him has been understanding and will appreciate his needs.  He is a good guy to have around and they will enjoy him one more year.

We made it through this chapter in the journey of mantle cell lymphoma. With the endless prayers, continuous acts of service, supportive friends, and progress in science we held together through it all. Although many sleepless nights and days of minimal existence prevailed for both of us, Spring brings hope, new buds, and flowers for life ahead.

Day 132

I do not feel compelled to report any more. That means progress for both of us. I go to work and feel I contribute instead of take up space. Dale stays home and works on projects he feels need to be completed.  He plans full days and has built some stamina, but it is slow. He is doing quite well, actually. If we did not know better, it would be just regular days, however, Dale must plan when he eats and where he can be within the hour because the food processes too quickly and causes issues. That limits being in public places for a time span. Doctors have not given much information on his constant diarrhea issues. Going back to work in about a month, will bring discomforts and careful consideration. When he speaks to his supervisor, he feels they are willing to accommodate his needs. That certainly helps the anticipation of getting into the work world again.

This is day 132 since bone marrow transplant. It almost seems like it happened to someone else. Immunizations begin in July, gently begin work mid-June, and Dale's oldest daughter and her family are moving back to the state! How sweet it is.

New normal

There is no new medical information lately. That is good. We attempt to get "back to normal," however, a new normal will need to be drawn. It is always there. One year ago, we had no idea this chapter would be written. Dale quietly was sliding down the cancer trail, and my patience wore thin for want of better answers than, "I don't feel up to it. I am tired." Now we know. And although, there is a clean bill of health now, we know it was, we know it may come back, we know remission can be short, and we know the battle is tough. For now, though, the new normal includes: 

Faith

Hope

Charity

Gratitude

Kindness

Gentleness

Understanding

Forgiveness

Patience

May we be granted many years ahead building and practicing our new normal. 

Aggressive treatment completed

The bone marrow doctor was more concerned about the lymph nodes in Dale's stomach and told him to make sure those are carefully watched. This doctor seems to be very thorough and gives information for better understanding of Dale's condition. He also told Dale his treatment was one of the most aggressively treated mantle cell patients he has seen and Dale did very well with it. Next time with him will be at the one year mark, January 2013. Immunizations begin in July.

Recovery time

We met with Dale's cancer doctor today. She verified good health reports, changed one medication, and set an appointment in one month mainly for the medication change. Recovery time is well on its way and there are no signs of continuing cancer symptoms. His lymphoma system seems to function as well as it should after a bone marrow transplant. The doctor indicated his fragile state in comparison to other 60 year old males, but Dale is doing very well. The immunization process begins about six months out from bone marrow transplant date, so about July. In the meantime, be wise whose air he breathes. She also told him not to have a colonoscopy for awhile. He is happy about that.

Several nurses thought he looked so good they had to rub his head and its baby soft hair. The nurse told him to not just walk around the yard (he did not tell her he mows the lawn while walking the yard) but to walk 15 to 20 minutes a day and increase it weekly. Hmmm. Who else tells him that? The tingling and coldness in feet may come from chemo treatments but also from his diabetes. She gave ideas to help with that (actually nothing I had not suggested already!). I certainly know my care-taking job for the recovery chapter.

Tomorrow we meet with the bone marrow doctor, who will have specifics on bone marrow transplant progress and what to look for. Things are looking good.

Today at Day 110 and cancer free

Just before treatment began and full of cancer

Middle of treatment 

Preliminary results

Preliminary test results are positive. The PA said bone marrow biopsy was good, blood counts okay, and pulmonary low, but that makes sense with Dale's sedimentary lifestyle for the past 11 months. His spleen is enlarged from the July report-that could be the infections of diarrhea lingering. Dale's color is better today, however, he is still fatigued. Along with his colonoscopy, they may order the esophagus/stomach screening, checking on his digestive/abdominal issues. I hope they change instruments and don't forget what end is up. I am glad he has time off to recoup as long as possible.

I met and thanked Mrs. Huntsman today for the cancer institute. She put her arm around me and told me how sorry she was that we had to go through the cancer experience. She is a kind and gracious woman.

Cold feet

We don't know what is going on, however, Dale feels lousy today with abdominal pains, low energy, grayish in color. He rested all day long. His feet and hands are consistently cold, blood pressure high, but then low, so he is not taking blood pressure medications right now. Tomorrow they want blood labs along with consult with a physician's assistance, so there won't be any definitive answers yet. Just more data for them.

Aging

Tests went well today, as far as I can see so far anyway. What do I know? PET scan took about 2 1/2 hours, chest x-rays were quick, blood labs, and pulmonary tests, reasonable, and the bone marrow biopsy was speedy. Because Dale was given a pain killer, he rests solidly still this evening. He looks not pale, tired, or sick, but older and grayer. He has probably aged 5-7 years in the last 10 months. Me? I didn't age. Just became wider, I mean wiser. His emotional well-being seems improved. He jokes, teases, and has sharpened his wit. We will not meet with his doctors until next week for test results. Tuesday we meet with the cancer doctor, the next day the bone marrow doctor. That gives the doctors more time to read and analyze tests results which is okay with us. Reports will follow. The fourth colonoscopy within this year is three weeks from now, then I suspect the Huntsman doctors may want to see him again for more discussions. It is not over yet, however, I believe that Dale's progress is in the right direction.

100 Day Celebration

Dale feels better especially since there have not been extra laundry loads for about a week. He made it through the 100 day weekend celebration I made him endure plus we have good food left over from the culinary artisans that brought portions of the dinner. It was a good thing to do.

Dale is restless. He needs to go back to work.With more energy to do what he wants to get done, he finds projects to complete and readies for the next one. Good thing it is springtime so there are many spring cleaning things to get done.

Tomorrow is day of tests. Reports on Wednesday.

Check it off the list

I have my office back. We moved Dale's PC stuff downstairs and I have mine upstairs in my room with a view. The clutter of a PC and all its cords moved out of our main view versus the clean simplicity of a MAC makes me happy! It took me 1/2 hour to re-hook up all the tangled mess of PC, and only 30 seconds to connect the MAC. One more thing checked of Dale's list making my existence comfortable. What a guy!

He complained of not feeling well most of the day as the diarrhea continues. What an annoyance for him. There must be something that can be done. Hope it is just diarrhea. Couple more days and tests, results, and doctor consulting may tell us more. Today is day 99! Good progress, except digestive issues.

People need people

Day 98 since bone marrow transplant had Dale sitting on the front porch admiring the view, feeling the winds of an incoming storm, and resting in between yard chores. Whoa! Back up, rewind! Yard chores? What is he thinking? With surgical mask on, he exercises as he works in the yard--one of his great joys. Probably good this year, because the lawn looks pretty bad right now and needs Dale's passionate care.

We had a pleasant visit with our church leaders tonight, checking in on both of us and the cancer journey. We continue to feel the care, love, and prayers of good people around us. I have heard Dale on the phone with his co-workers; they miss him and the spirit of support shines in their conversations. My co-workers show me continual support, understanding, and excitement as they hear or read of Dale's progress. People need people. We sure do.

Not if but when

As you read Dale's blog, you feel his emotions of frustration and respect/fear of cancer. It is no respecter of people and takes it own course. He works to make sure all will be well for me when the day comes he is not able to do so. It is not an if but when it happens. Life has been shortened for Dale. Maybe 15 more years, maybe 1. With that in his mind, all things must be in order for him. He is feeling the urgency to accomplish what he feels must be done and that is hard, when he does not feel physically well enough to do so, however, he keeps working at it the best he can.

Dale makes it through each day with varying levels of energy with the emotional impact cancer has on his existence. Appetite is low, food is tasteless, joy in a good day of production is minimal. He does what he can and frustrates that he can't do more. Dale is my hero and always will be. He does well in my eyes.

Unfairness in lymphoma

Dale does not feel well at all today. Chills, headache, fatigue, and more diarrhea. He tries hard to be positive and upbeat, however, he feels like ________p! But no extra laundry loads today, yet.

Our sweet, young friend passed away this morning. Her battle was valiantly fought with courage.

Improving slightly

Dale happily made it through all three hours of church today. He is able to do much more each day than he has for a long time. He still has some situations after he eats that are uncontrollable, however, the diarrhea is not as bad as a week ago. In a week, he will undergo all the tests for BMT for progress and also meet with the BMT doctor for test results. A week after that, his cancer doctor.

We took the week off and traveled about 3 hours south for Spring Break. No unplanned stops on the way there but two on the way back. The break was good and well appreciated.

Our young friend who has lymphoma, is not doing well. We are so sad for her and her family. Cancer is not kind.

Gift of hope

Appointments are on April 16th for all the medical tests, PT, CT, lungs, heart, bone marrow biopsy, etc checking Dale's overall progress. The reports will be compared to tests completed before bone marrow transplant, and hopefully, of course, a clean report of progress will be heard. Dale seems to do okay but needs periodic rest periods.

We were at a store talking with a sales representative when Dale excused himself to sit down. The salesman and I continued talking and found that he had lymphoma cancer treatment, remission, and a few years later, lymphoma chemotherapy and bone marrow transplant for the second round. The two men immediately bonded exchanging stories, and comparing treatments. The salesman provided Dale with well needed HOPE for the next several years, indicating the progress made from his first to second rounds of chemotherapy and then again to Dale's treatments. Cancer research is gaining successes all the time. And interesting, that we happened to meet with this gentleman. We purchased nothing, but left with gift of HOPE.

In favorite chair resting

Dale rests after hours of honey did projects. Jan did all the projects. Dale tires watching.

Domestic chores

Although Dale works around the home and yard, he feels unproductive. I am not sure what he means by that, since he is not supposed do yard work for a year they said. Domestic chores are his exercise and joy so I am okay with that. I can certainly create many domestic chores to be completed in assisting his feeling of productivity... Dale needs projects to feel good about himself and there is no holding him down (however, I am still stronger than he is and could if I had to!).

His hair grows strong and he has to shave all the time now, annoying to him because he got used to not needing to. Oh but the woes of being a man! Dale's health progress is good, however, two extra laundry loads this week, shows there are still woes to deal with.

Best gift

Last November, while Dale was quite sick, he told me to go shopping on Black Friday, the day after Thanksgiving. He was receiving more chemotherapy, getting ready for bone marrow transplant, and doing all he could to stay positive. I went to the mall, walked in stores, and wandered with the crowds. I came to the jewelry store and found a Black Friday special for a 20 year anniversary ring-simple band with a few diamonds. I bought it with the hope he would actually make it to January 18, our 20 year anniversary. I did not think he would make it through the next treatments. His condition at that time, still very fragile. Several weeks later, he was released from the bone marrow transplant hospitalization on our 20 year anniversary. A great gift. I did not get flowers, however, I got my Dale. At day 85, he has come a long long way since Black Friday.

Day 84

Today is the 84th day since bone marrow transplant. Dale gets restless, which means he is healing well. He finds projects around the house and yard, which is fine with me, because they need to be done sometime. Projects are broken into chunks instead of one huge exasperating day of work. He works on a physical project, rests, then on thinking projects, which go on and on and on. I am not sure which is more dangerous for his well-being....The diarrhea seems to be subsiding for now with the stronger antibiotics; hopefully, it is just an infection and will go away in a few days.

Show-and-tell

My science project, Dale, visited school today. A good day to do so since there were no students. Those that were there enjoyed the show-and-tell science project and I enjoyed the smiles he brought. He looks well, a bit of hair, good skin tone, and bright smile. Most had not seen him since December and he was pretty chemoed. I was glad he felt comfortable to come in and meet some people and those who read the blog were delighted to meet the main character. He did well today.

Impatient

A productive weekend brought a much needed day of rest for Dale. He wants to be able to do his regular spring chores, however, he is not strong enough to do so, and that is difficult on him. He directs now-a-days, and I do the work. I am happy to do so, but Dale thinks he should be doing more, regardless of cancer recovery time. He is impatient! He reports not only being tired, but just not well. Continuous diarrhea would do that to anyone. There has got to be another option in the healing zone rather than diarrhea. The new medicine does not seem to be doing anything different. I suppose when all the tests come around in about 20 days, diarrhea will be discussed, once again.

No extra laundry, today anyway

Dale was a busy young man today and had plenty of energy to do the domestic chores around the house that he loves to do. Sure is nice when he is able to do so. This was completed with continuous nature calls, however, he was glad to be home to answer the calls. It makes for a good day when the laundry loads are planned laundry loads in his domestication duties.

No word on the lab tests yet.

Quick production

Dale's blood levels improved, energy better, but diarrhea continues. Doctor hopes it is an infection and not something else, took another test sample, and prescribed a stronger antibiotic. Since he needed to give a sample, we headed to the 6th floor eatery at Huntsman, Dale ate some breakfast, went back to the 2nd floor doctor's offices, and within moments, Dale was ready to produce the sample. That quick.  Results of sample will take a day to decide. Her concern was good to note because the diarrhea is persistent with Dale's daily life.

Note the good signs of skin color,  hairline, eyebrows, and mustache. 

Ditto

The report today is ditto of yesterday. Tomorrow brings blood labs and doctor visit. I hope they figure something about his excessive diarrhea. It is a constant. He cannot eat a meal without a rush to bathroom within the hour, or perhaps much less; he never knows until 30 seconds before it happens. He eats to live now a days, and sometimes not even that.  If we need to be someplace, Dale will not eat prior, lest he....and that is not a pleasant experience. Unfortunately, it happens. Unscheduled small laundry loads continue.

Oh-yeah-cancer

Dale spent the day resting and thinking. It would be nice if he felt well enough overall to do things he likes to do and find his joy once again. It has been almost ten months of living with the diagnosis of cancer. We are further down the line than we were told in the beginning by at least three months. Sometimes we think it is all done and then there is a bump along the way bringing us back to oh-yeah-cancer mode. He is in the seventies this week in the bone marrow transplant countdown number and that means, still be diligent in care. Soon scheduling will be made for all those medical tests ensuring progress.

Dripping sweat

Our out of town time was productive and good treatment for cabin fever. The first day, Dale had more energy than we thought possible, however, the next days, he had to rest the majority of the time. Fortunately, he had a good book, which he finished. While it was warm the first day, we noticed that Dale actually had beads of sweat dripping off his baldness.

It may seem crazy, but we got excited since he had not done so since August of last year. Hair and sweat must be nonessentials for body existence. My explanation of such loss of body functions during chemotherapy: the body gets rid of as many nonessential functions it can to sustain life in order to deal with the killing effects chemo has on it. The body goes into survival mode. Since the last chemo was the last week of December, the hair and sweat are returning.

Strength by both

I came home today finding Dale anxious. Then as I helped him to process his day, I found out why. His blog talks of my strength versus his strength. He does not like to admit, but I have always been the stronger one between us. He was stronger physically one day, but I have always been stronger, mentally, emotionally, intellectually, and physically. Woot! Woot! He is taller, so I capitalize on that, but I am stronger! He does, though, rule on the spiritual, social, creative, shopping, and chemotherapy endurance strength.

Eyebrows

Infection, depression, and boredom, makes for sad days. Good that Dale is treated for the infection and his body is facing it alright, bad that he is still getting the same intestinal infection so frequently. Good that Dale's mind is clear enough to have the feelings of depression, bad that he is in such a state so frequently. Good that Dale is bored because that means he wants to be productive, bad that his body is not quite ready for the production Dale would like to do. Answers: stay out of hospitals where the infection jumps into Dale's system. Accept visits, calls, or notes from people. Dale is a people person and needs us around him. I believe the respect for his fragile immune system condition is high and appreciated, although, Dale needs people. Feel free to call or visit him, however I say this today and then I am taking him out of town for the next few days. He is healthy enough to road travel, (airplanes do not have infection clean air) we have business to complete, and the trip together will be good for us both.

Eyebrows

Progress: eyebrows are visible now, his mustache is darker than before, and gray rules the beard, but the loneliness and depression remains in his eyes.  We had a little family visit last night that brought joy and colored pictures to display on the fridge. That helps.

Rest is best

Today went well most of the day until late afternoon when Dale began feeling ailments of a headache, stomach ache, and almost a fever. I say almost, because it isn't there yet but he feels that it could come. He is pretty good at knowing when his health is on the edge. Rest, rest, rest, is best bet. Perhaps, we again, try to do more than he is ready for. His intestinal infection is still there, but in better control. He is discouraged, although hanging in as best he knows how to.

Cancer remission heroes

I live with a good man who cooks too. Dale wants to help as much as possible making his day productive and contributing to our domestic and academic chores. His energy increases each day and his domestic skills are in working order. We took a walk grocery shopping, returned home, Dale rested, I studied. Dale cooked dinner, I studied. We ate, Dale rested, I cleaned the kitchen. We walked around the block outside, Dale rested, I blogged. Dale is progressing well, still needs a bathroom within sight, however, better than earlier this week. He can handle more activity than a week ago. He has visible beard growth and fuzz on his head, which makes him happy. The toxic chemo must finally be gone from his body.

I believe the blog topics may become mundane, monotonous, repetitive, and redundant (see?). We are slowly returning to somewhat of a normal life, albeit, Dale is not working yet, he can't be in public without his surgical mask, and his immune system still needs healing.  Our daily happenings are like others out there with no reports of particular interests in the remission side of cancer.

Did you read that? No reports of particular interests in the remission side of cancer, that statement itself is reportable! Amazing, but here we are! Remission. Anyone in the remission side of cancer is a hero to me. It is a tough battle. Dale even told me that kidney stones were nothing, really, compared to his cancer treatments.

Writing this blog helps both of us not only to process the journey's experiences, but to share our story. As it dwindles to regular life, I will miss doing so and just may need to begin a new blog about the happenings at high school through my eyes as an assistant principal. I will need to create total anonymity, pseudo names for all parties, places, leaders, students, and faculty, to protect us all. Could be a good read, never boring or dull, and comments of "you can't make up this kind of stuff."

Some day, eventually

It must make for a long slow day for Dale as he mends, alone, at home, every day. With limited capabilities to do what his mind wants to do, he does what he can. Since his body screams to be near the bathroom with another bout of diarrhea from the intestinal infection once again,  most activities are limited.  Dale works well to keep his spirits in place to heal as fast as possible. The sunshine is great, the clear skies better, and hopes of gentle warm days bring happiness to his soul. He will want to mow the lawns and do some yard work, however, they tell him not to for a year; too much of a risk for infectious things out there. That will be hard on him.

He must be feeling better (sans diarrhea) because he is anxious to be productive and active, but his body is  slow to recoup enough to keep up with his desires. One day, it will come, eventually.

Women vs Men

Doctor's visit was short and encouraging. Blood counts where they should be, albeit white count down, but that is normal especially with his kidney stone escapades and confirmed intestinal infection.  She told us Dale is doing well, will see him in two weeks, and then shortly after that the BMT team will begin their  overall health status tests. Moving forward.

I returned to work with a greeting from my boss: "What are you doing here?" I told him I was just checking if I still had an office. He said yes, so I busied myself with the stuff on my desk. I began to think of the several days away I had and the impact it had on my emotional well-being. When the trip began, I told myself I would focus on the girl's experiences, get to know parents & coaches, and enjoy the trip with each of them. They were a great group of people. The moms kept asking me questions; how did you get selected this year to come with us? Do you have any kids? How come your husband did not come with you? And then, how could you leave him alone? Is there someone taking care of him while you are gone?

It went down hill from there. The women kept asking questions and as hard as I tried to answer generally without mention of bone marrow transplant, cancer, or compromised immune system, I shared all sorts of information. The compassion surrounded me, the care given, and the understanding shown. But there were also looks of "how could you not be with him?" and some "you should feel guilty for not being there" insinuations. That made my trip with the girls difficult because of constant discussion and questions brought to the forefront thrown in with emotions I am not experienced with. I am experiencing many new emotions and feelings that are all jam packed into eight months that most women learn over years of motherhood.

Then I thought if I had accompanied the boy's teams someplace, first, the dads would wonder what the heck I was doing there, and second, they would ask no more.

Back to my boss's statement to me for being at work already. At the end of the day, we had a few uninterrupted moments of discussion,  he asked caring questions, he listened to the answers, and I was reminded once again, why I really like working for him.

Caretaker Brain

Today was a good day for both of us. I decided I needed to stay home and be with Dale through the day. We needed the emotional connection and support we give one another. He was alone and quite uncomfortable for several days, and I was exhausted. I thought the exhaustion was physically induced from several days of constant walking in the sun in Disneyland and trying to keep up with 20 drill team girls, but once I got home, I felt an emotional relief. Part of the exhaustion must be from the exhausted caretaker brain. I figure if Dale can have chemo brain to excuse and explain, I too can claim a brain. It takes emotional energy to caretake from far away. It is just better to be together.

I did nominal tasks around the home keeping it bone marrow transplant patient clean. Dale helped in changing the sheets however, became winded assisting me. His stamina is minimal and he does what he can, hoping to be productive somehow. Doctor appointment in the morning, labs, and hopefully, just good news of progress.

Rolling stones

Dale had a painful day after his night in the ER. He left a little treat for me to observe, which I believe to be the stones. Hallelujah! He will check with his urologist for any more treatments. Dale tells me he does not feel well, about like he did before we knew he had cancer, sick and sluggish. The visit to cancer doctor Wednesday may give some insight.

Not good sign

Dale's health is a mess. Today brought a visit to the ER once again because of blood in urine. He said pain and the blood alerted him to the point of deciding to go to the ER. A friend took him this time, since I am out of town on school assignment. Good thing we have great neighbors. I do not know results yet but will report when I know more. Fortunately, Dale has his regular appointment with Huntsman on Wednesday and he will need to report all this information to them. I thought I might send Dale alone to that appointment, but probably not. Progress has gone backwards with the whole kidney stone issue.

Slow healing

Today did not bring any changes for Dale's stones. He says he does not feel well but it is manageable. He met with some friends for a few hours and had a delightfully fulfilling evening. It is always good to keep those close connected friendships going. Our young friend who I mentioned a few weeks ago that has lymphoma, continues to have complications. Fevers led to viral pneumonia therefore she has several types of antibodies and other drip lines into her system. I feel so sad for her. This is tough to deal with. Although, Dale and I think we are doing fine, things sneak up and I realize the cancer and Dale's continuous healthcare is first priority. We work at "normalizing" life and it's daily tasks, but cancer is all encompassing and takes over. It is everything. The cure/treatment is a tough, unknown route of fragile health complications making it even worse. Neither Dale nor our friend heal very well any more it seems now. I hope it improves with time.

Hoping

Kidney stones are stubborn. Even after a transfusion made to assist in their movements or dissolvement, Dale reports pain and a day of diarrhea. Will that ever go away? He is exhausted and needs good rest (and lots of fluids). We hope the night is either productive or just peaceful. We are hoping there will be no other complications for at least 15 years!

Three stones

Not one, not two, but three stones for Dale. He will go to the hospital tomorrow for an infusion to make the stones pass. That will be a relief for sure. Pain is more intense tonight, although not unbearable. He made it through another day without incident plus he took a short walk today. Dale is maintaining okay.

Quietly pale

Dale's skin tone is pale. He does not look nor feel well. He reports feeling just as bad during chemotherapy. Kidney stone probably still there, but the pain comes and goes. Is the stone moving? Will his system let itself heal? Is the pain really from the kidney stone? Dale quietly makes it through each day with hopes of improvement or stone movements. Which reminds me, diarrhea is apparently back. He has weakened and works at hydrating and eating to maintain what energy he has left.

My thoughts tend to make me think that bone marrow transplants are fragile and the body needs at least the 100 days to begin its progress back to adult system standards. Today is day 55.

Not a burden

Dale continues to suffer with kidney stone pain. As I spoke to him throughout the day, he quietly reassured me he was doing okay. Sometimes the pain was worse than another, yet he spoke to me with pleasantries and kindness. Throughout the cancer treatment experiences, he has not complained, shown anger, nor felt sorry for himself. Dale apologizes to me frequently for "putting [me] through this."  He certainly does not want to "get in the way" or "be a burden" to anyone.  He is not a burden. Stress, yes. But not a burden. He is a good man and worth every bit of that stress.

I find it interesting and reassuring that so many people care, read the blogs, ask questions, want updates, show understanding, and lend support for us still. In spite of tragic news through the day (locally and globally), our hearts are warmed with your concern and care. We believe in the goodness of family, friends, and people, and the hope we bring to one another.

Thank you.

This too, has not passed

The weekend did not bring out the kidney stone, yet. Dale endures the pain pretty well, remains quiet, and tries to be in good spirits. But, oh my! As I spoke with people at church today, they all grimaced at the thought. I suspect, they know from experience. Dale's appetite increased today from yesterday, so I believe the pain is not as severe. He is weak and his stamina he built is now lost. Since his immunity is fragile, I wonder if kidney stones will cause some other complication or if it will take longer to pass and Dale will have to endure more of the pain.

Progress goes inside out

Dale is a stubborn man. I left him this morning with slight complaints of "just not feeling well" but he thought okay. A couple hours later he calls to report he had taken himself to the ER. Hmmm. A CT scan later and they tell him he has kidney stones, give him some prescriptions, and tell him to find a ride home. I picked him up, put him to bed, arranged for a Dale sitter, picked up his medications, got a ride back to the ER to get my car, and he slept through it all. I hope it passes soon. Pain, nausea, and feeling lousy once again. Is this what retirement and old age is like?

Day 50

As one reads Dale's blogs, one may note his progress and feelings of gratitude. He expresses gratitude and  feelings of appreciation with hope and love. This, to me shows he is getting much better and able to deal with what is in line for him now for the next several weeks of recovering to the point he can get out more. He still needs his mask for quite awhile, as well as protection from infectious people, but health is on its way and he can see it now. He is on BMT day 50 today. Half way to the magical 100 day mark. That time went by quickly! 50 days ago was the day of bone marrow transplant and Dale is ALIVE and doing well.

Boo-yah!

Boo-Yah! Doctor put Dale on the maintenance program today, which means blood lab checks every two weeks or so, moving that to a three month stretch between visits eventually, and just be careful with the infection part of this whole thing. Good day. She also told him to wait for the colonoscopy until the 100 day mark to lessen the infection probability. Dale is happy about that! No dental visits or other types of possible infecting procedures until he is well beyond the 100 day mark. She also took him off blood pressure pills since his heart rate is fine. Now, build the stamina a day at a time. Double boo-yah!

Reading is good

I have caught Dale reading a number of times lately. That means his mind is clearer, his motivation improving, and his ability to concentrate increasing. Perhaps the annoyance of advertisements on TV reminding him of excessive TV time while receiving chemo and so forth, has soured his comfort with the TV. Reading is good. We have many books to be read. He reported feeling somewhat better stomach-wise, and thinks it may be his anxieties sneaking in. Yup, the mind is clearer, able to process, and make sense. Dale is moving forward.

Fortunately

Fortunately, the day was a beautiful winter day with blue skies and white clouds hovering mountain tops. Fortunately, we have a fabulous view. Fortunately, a dusting of snow makes the world look pure of pollutants. Fortunately, we went for a short drive and a bit of walking.

Unfortunately, Dale continues to suffer with post-chemo depression and stomach ailments. Unfortunately, nothing seems to help him feel much better. His appetite is fragile and sensitive to most foods this weekend. He is working the best he can to make each day a good one. Unfortunately/Fortunately, Dale does not have the hourly attention of nurses taking care of him keeping him in conversations.

Fortunately, he has a doctor's appointment on Wednesday.

Day of rest

Dale needed a day to rest. I suspect that we think he can do more than he really can and needs to slowly add activities. His mind wants to participate and do every day life things, however, we need to be careful. Immunity system gains strength but how do we know? I believe we may be somewhat negligent sometimes and need to tighten the routines and care. A day of rest is a good thing to do.

Not contagious

Dale has shrunk some in the last seven months and needed a new suit so we went together to the store to choose a good fit. Sales people don't really know how to handle a 6'2" very bald man with a surgical mask.  He had to go back alone to the store to have it altered and hemmed to fit. He reported the sales people treated him as though he was buying his funeral suit. Oh well. Maybe it is okay that people don't have the experiences to know that someone in Dale's condition is not contagious.

Day 45 since bone marrow transplant

His energy continues to improve, he drives us around on our domestic errands, and helps around the house (except on things he does not like to do, he claims he needs a rest). Resting is good.

No radiology needed

Nope. No radiology needed. One more thing to check off the list through this process. Maintenance is enough to do.

We visited our young friend (almost 23) in the hospital as she begins her chemotherapy to prepare for bone marrow transplant. She already went through several treatments, platelet and blood transfusions, remission for one month and then cancer came back with a vengeance. She will need a bone marrow donor. Her system is too compromised and cannot be used. She has great family support, fantastic attitude, and is doing the best she can. We were glad to see her, as we know what it means to have supportive friends and family to talk to.

Dale was asked if he had good support. His answer to the resident doctor today, "Yes, Jan is very supportive." The resident doctor added that Huntsman has support staff available and asked if Dale had spoken to anyone. His reply, "Yes I have and that is when my depression began!" There is just no one like Dale's Jan that knows how to support Jan's Dale.

Worth doing

Depression is a mean thing. Dale battles with it daily, expanded and emphasized with post chemotherapy. He gets quiet, lethargic, and his essential tremors worsen. Besides all the physical ailments of cancer he deals with, depression takes as much of his energy as he can to keep it in control. He gets a boost with people contact, although, that can't always happen because of his condition and respect of his fragile immune system. Working with Dale's emotional well being has become a full time job. I am pretty stable, and as my mom says "a woman of substance," so the challenge is another adventure for me. Besides, Dale is worth it.


We go to radiology today for a double check that cancer is gone.

New chef in the house

Dale finds he is able to focus better each day, finds activities to do, and feels his mind is clearing. He fixed us a wonderful meal tonight and did a great job! What a treat it was. If he cooks, I will certainly clean up. Looks like we have a new chef in the house who has time, ability, and motivation.

I continue each day, meeting it with hope, love, and joy for the lessons of science, service, friendship, patience, and opportunities. Another friend told me what an inspiration Dale and I are to those around us, as they read the blogs, talk with us, and wonder how we do it. How else can one handle something like cancer but to have the faith, courage, and hope? We gain strength from each of you. I do not know how it works, but we gain strength because you care enough to read, call, visit, inquire, send cards, or give blood (sounds odd in this list, but giving blood is awesome).   Thank you.

Today there are over 10,000 visitors to this blog. I guess our story is an open book!

Acts of kindness

Acts of kindness on Valentines Day

When I come home, I usually come around the house from the main street in the front. I like the view, less traffic, and I know who is visiting or what is on our door step. Today had a pleasant surprise of many valentines, beautifully decorated and lovingly placed with get well wishes and we love you notes!

My first thought was Dale being creative with his time and reliving childhood practices, since he is less than 2 months old with new blood system working now. But then I realized, he would not know where the paper, markers, tape, and scissors would be to decorate. Some kindness, once again, has come our way. He thought he might have heard something earlier in the day, but did not notice what was happening. The Valentine Sweethearts secretly placed the wishes and disappeared, just as it was back in the day...We are grateful for the continuous goodness shown to us from many.

Dale is getting bored. He has begun to look around for projects he thinks he can manage. (Perhaps I can set some up for him to do.) This is a good sign. It means he feels much better, his thoughts are clearing, and stamina is improving. Weather is good enough, he just may be able to walk a short block or two, once in awhile. Radiology appointment this week and next back to his mantle cell doctor. Week after that will be another colonoscopy. (Oh joy!)

Roses

Waking up after a long night of odd dreams, Dale decided he needed more rest before beginning his day. I called him a few hours later making sure he was okay. There were noises in the background that I did not recognize as TV or visitors. He had to confess: he was purchasing Valentine roses for me a day early to stay out of crowds of breathing people and because he always feels better when he is thinking of me. Yes, he drove to a store, met me in the school parking lot, and presented me with the roses. He had his "blue nose" on and carefully kept away from more people breathing.

My roses are much prettier. 

What this means: he is doing well enough to drive short distances, be on his own some, and think clearly. Progress.

Daily steak

Dale's energy and stamina continues to improve. He is able to get out more, stay up longer, and do more on his own. His cognitive ability seems normal most of the time and his depression is lessoned. I believe he is healing and progressing well. Such a different feel than a few weeks ago. We are still careful about being around people with possible infectious conditions and what he is able to eat. Dale wears his surgical mask in public all the time. I have his favorite meal memorized now, (cubed beef steak-well-done and cauliflower) which makes it easy. He is anemic according to blood labs from last week therefore, daily steak is just fine. It seems unusual, but there is only one planned medical appointment this week. 

We continue to be grateful to all that continually show concern and care for Dale's condition and my needs in it all. Each day, I can depend on caring words and kindness surrounding me. Once Dale is able to return to work, I am sure, he will be greeted with the same. Now, phone calls and visits sustain him as he loves to talk to friends. 

Building stamina

Each day brings a little more energy and stamina. I believe Dale is doing well. He continues to rest well during the day but is able to be up and about much more than last weekend. I guess I will get to put him back to doing his chores around the home (Whoot! Whoot!) I heard today about a young friend of ours with lymphoma thought she was in remission, but is not. More chemotherapy and probably bone marrow transplant will be coming. Sure hope it goes well for her. She has her whole life ahead of her. This cancer is not something to mess with and we feel fortunate Dale has had great care, support, and successes so far.

It is not over, however, we feel he is on the mend ahead of schedule. Thanks to all the love, care, prayers and support from so many people.

Blanket of care

Dale's soul has been warmed by friends once again. Secretaries at work asked how he is doing and I responded with, things like "he is doing okay, complains of nausea sometimes, tired & weak, but overall okay except lately he chills throughout the day." Both secretaries grinned and told me of their experiences with an electric lap blanket. A few hours later, they came to my office with a gift of said blanket for Dale. (How they snuck off work to get it, I don't need to know.) He is very grateful for the warmth it gives and immediately felt better from the care and concern given to us. Me too. People are wonderful, really. Good to have them around, just don't breathe on Dale.

Maintenance time

It took over 30 minutes for the nurses to draw blood today for blood level counts. Dale now has five bruises on arms and finally, his wrist vein worked. His nausea and gaging set in as they kept poking holes in veins with limited success. The central line is gone, so arms are main source to draw blood from. Once the doctor came in, he released Dale from the bone marrow transplant team. Doctor said he will see Dale on about Day 90 when they go through all the tests again. Then as Dale responded with off the wall comments, the doctor got right back at him with, "and I can refer you to a psychiatrist who works with post-chemotherapy patients." I laughed! The doctor is not only brilliant, but quick witted. Next week, radiology, week after that, back to his mantle cell lymphoma doctor. Maintenance time.

Chemo-brain

Dale's nausea is taking over again and reports he lacks focus and cognitive capacities. He has a strong heart (physically and figuratively) although the rest of his organs seem to be affected by the chemotherapy. Nurses refer to it as chemo-brain, chemo-stomach, or chemo-fatique, etc. He sleeps a lot but does not get much rest. Dale maintains each day, and I am sure his chemo-brain thinks a variety of thoughts to pass the time.

Bone marrow transplant doctor visit today, we believe, will be the official release from his care and back to the mantle cell lymphoma doctor. BMT has periodic visits in the next year for progress and tests, but since the transplant is good, they are done.

Flying solo

Dale calls it "flying solo" when I am not here with him. Today was his first day flying solo. I actually left him to fend for himself for 6 1/2 hours. I came home to pick him up for a doctor's appointment and he was sound asleep. He wore himself out with the vacuum cleaner (he wore his face mask to protect him from the dust). Just upstairs, Mom. He emotionally felt better, but physically, tired. That is okay, if he does just a little bit at a time, more strength will be gained.

His primary doctor appointment was fine with that doctor commending Dale on having a great attitude and the will to win the cancer journey. A friend of his with the same cancer is not doing well with the treatments. Dale is way ahead! Good job, Dale. The doctor ordered Dale's blood test updating non-cancer related health conditions, which he said look pretty good. He did not even add in that comment of "considering you had over 1,300 hours of chemotherapy, your health is pretty good," Lots of rest, weight loss, and being in a semi-retirement environment may have helped the health improvements....

Getting back to work was a good thing to do. I really do enjoy my job, the people I am with, and the profession I have chosen. Or perhaps it chose me. Now that Dale is doing so much better, I am able to focus and work on my proposal, and am getting closer to submitting to committee chair for the next steps and its defense to my committee. Feels good. Perhaps I am flying solo, too, as I prepare for my dissertation research.

Public appearance

Dale made his first public appearance (besides grocery stores and hospitals) today at church. First off, he looked pretty sharp in his suit. Next, it was fun to see the delight many neighbors had when they recognized he was there. Several took a minute to figure who it was. Clues included his bald head, surgical mask, and my big grin. We could feel the excitement and joy so many felt for his progress thus far. It was good to share in the blessings we have felt in this cancer journey. Good folk around us sustaining us both, not only on Sundays within our neighborhood but extending to our work families, friends all over, and our families. Gratitude to all. The treatment is completed, now the maintenance begins.

Doctor to doctor

Doctor's visit was productive. Dale is doing well with nothing out of the ordinary. They made some adjustments on medication specific to his lack of immunity that may be gentler on his stomach. They also gave suggestions on when and how to take it. Appointments next week: one with primary physician to go over his general health care and all the other medications he has, perhaps adjusting since Dale has lost 47 pounds. Another appointment with bone marrow transplant team with anticipation of their release to his mantle cell lymphoma doctor. And the healing begins. He does a bit better each day.

I will go back to work on Monday, actually before release from BMT, but it will be fine--I will be taking him to the doctor mid-Monday anyway, may as well try to re-acclimate myself to working, and giving him independence opportunities. He is getting a bit anxious about me leaving, I am getting a bit excited to get back to my world of work. Hmmm.

Slow rehab

Dizziness, fatique, and stomach pains won out today. When Dale stands up, he sits first to gain balance, and then continues to stand, but even the slow stand brought dizziness. It happened several times today, which is concerning. Not only did he not sleep well, but his fatigue level seemed to have increased. He reports that his stomach aches and does not keep food in there for very long. Something else must be going on. We go to the bone marrow transplant doctor tomorrow for more direction about BMT. It will be day 30 for BMT which means he adds another medication each day and that he has made it that far. I think it will be that each day will be independent of another day. Progress today does not mean more progress tomorrow. Changes come quickly and quietly. I may need to do short days at work to assist in more rehabilitation at a slow pace.

5000 miles

Dale was pretty energetic today (in comparison to the last six months, anyway). We readied our taxes to give to our tax accountant, went grocery shopping, and were visited by neighbors all in one day. Dale rested periodically to keep going, but he did well today. He is able to think forward and feels the progress happening. He still complains about stomach pains and will address that with his primary physician on Monday. The radiology appointment was made today and it will be at the Daybreak Huntsman Center. That will be nice. Five minute ride. I traveled just under 5000 miles to Huntsman Hospital in 2011. (And only one wreck!) My mileage is nothing in comparison to the many people who travel there from all over the world. I do not think we will need that many miles this year, however, I did not think I would for 2011 either, until June came.

Another day down

Today was a mellow day for both of us. No incidents. Nothing exciting to report. Dale battles with a slow heal, but works hard to maintain his great attitude. He is a little bothered that his bald head is still bald. Peach fuzz is still fuzz. A friend reminded him that newborn babies sleep most of the time and Dale needs that much to allow his body to heal and build its immunity. We will probably begin celebrating two birthdays each year, adding bone marrow transplant day for the second one. Dale's appetite is improving and his system is beginning to function normally, he just continues to be very weak. Emotional support is especially important now. Self worth and doubt sneak in sometimes. That is when I work my hardest to support and bring him my best.

Central line is out

We traveled to Huntsman today in order to have them take out his central line (hickman, port, or whatever you want to call it). After one office to the next and then the next, which was at the University Hospital, it was carefully taken out. Radiology, doctor, and a nurse assisted in taking the lines out without incident. Radiology lights the way for doctor to see what is going on and the nurse, assists. Keeping the dressings clean and dry is Dale's job now. If they want to draw blood, or give blood, they will use veins in his arms to do so. No more flushing the lines, no more blood thinning injections, no more blood clots. Moving right along schedule. Yahoo!

We returned home, and he took a nap. Well, we did have to walk some long hallways at the hospitals--natural exercising worked.

Cruel & unusual

I came home today being out for a few hours to attend church, and found the keys on the counter and an empty McDonald's drink glass. I said nothing but inside, stewing up some comments: Fine! If you think you can start driving already and eating fast foods, you are on your own, buddy! You know what the doctor's orders are as well as I, and McDonald's and driving are not on the list. However, I said nothing and begin to make myself my dinner and begin talking about other things to Dale. He eventually volunteers that he had not gone anywhere, had visitors for awhile who left the McDonald's glass, and that he put the keys on the counter to get a reaction out of me. Cruel and unusual punishment for my complete devotion to Dale's well-being. Good thing I know how to advert the focus.

But that means he is feeling better, trying to get a smile, and wanting attention. But it still was not very funny! Diarrhea seems to be gone, weakness continues, and he chills easily. One day of many healing days to come.

Out for a drive

We took a drive today taking advantage of the sunny winter skies. It was nice to be out, however, once we returned home, Dale took a several hour nap. We were out long enough to indicate he has better bladder control today. That is good news. He must be healing. We both need to pay attention to his fragile condition and realize he needs to build up the stamina gently. It will take time and lots of it. Dale keeps the positive outlook and continues to endure with great strength. He told me I have only been "testie" twice during all of this time. Good thing I know how to hold my tongue because I think things sometimes that may be construed as "testie" but I deal with those thoughts silently not to interfere with Dale's emotional state. He needs all the goodness I can muster up giving. Sometimes, I admit, I busy myself with stuff enabling me to regroup and come back and care take with kindness. We are both doing alright and know each of us need each other's support. Kind of sweet,eh?

Bonus day

Doctor's appointment went well today. Blood levels are doing what they are supposed to do. Doctor was actually surprised how quickly Dale was released from the hospital from the transplant. Dale is like the textbook example, sans the continuous diarrhea and nausea. He told Dale people normally stay at least 3 or 4 days beyond what Dale did. However, because of the consistent issues from the last chemo-treatment, the doctor wants to see him one more time making sure Dale continues to heal.

This doctor will see him next week to finalize this phase and then at 100 days and one year mark. At each of those appointments further testing will be done, as they were to begin the bone marrow transplant process, to make comparisons in the healing. In the meantime, radiology will check him over ensuring there are no cancerous tumors anywhere. That appointment is yet to be determined when it will be.

Another bonus: the central line will be taken out on Monday. No more need for it especially since it causes the blood clots. I will not have to inject him with the enoxaparin after Sunday morning so blood clotting will be okay to take the line out. Nor will I need to flush the lines anymore after Monday! Healing is on the way. Yippee! But what do I do with all those supplies (injections, flushes, etc.)?

This morning's activities, though, wore Dale out. The heal will be s--l--o--w! From this point forward, as far as I know, there is only checkups and healing on the way. Dale will go back to his mantle cell lymphoma doctor in the next couple of weeks and I think they will also do their checkups periodically. Nurses insisted that Dale needs to take time to heal properly and not try to rush into normal routines. I need to ask about the continuous face mask requirements, immunization time schedule, and restricted cooking guidance.

Life's transitons

Dale's day brought more diarrhea and a much weaker state. We thought we would go for a drive today, just to get him out of the house, but the thought of bringing a porta-potty with us-quashed the idea. His appetite is nothing, yet he knows he should eat. We go through several suggestions and options before we agree what he will eat. He said: "I don't know why I am so weak!" My answer: "It is because you haven't had ice cream for a long time!" Dale responds with: "I don't think I will ever eat ice cream again..."

No more ice cream sharing!

My reaction: so sad! One of the simple pleasures of life! I suppose he has come to the necessity of becoming a person who eats-to-live instead of living-to-eat. Sad transitions of life's changes.


But think about it, Dale has been horizontal for the past seven months, in hospital beds, couches, or bed at home. He does not walk further than the bathroom or kitchen, and on a good day, down the stairs (and eventually back up the stairs). Muscle tone is gone. He needs physical therapy and a trainer to come in and get him conditioned in a manner his body can handle. My gentle persuasions haven't worked.

Sunshine

After thinking Dale was slowly getting better, he reports that he feels lousy and quite weak. The home nurse changed the dressings and he seems okay, but ongoing nausea, restless sleep, and diarrhea keep him  wondering when it will all be done. His gag reflex is high, which does not help much. Appetite is sensitive and I have a hard time anticipating what he thinks will work for him.  I spend my time making sure the house is clean of dust and germs, washing extra laundry loads, cooking Dale's wishes, and care-taking on demand.

I am so glad the sun is shining strong today.

Still healing, albeit slowly

Dale's nausea and diarrhea is still there, he can't stay upright very long before he needs to lie back down, and appetite is so so. Nights are restless and uncomfortable, days long and on the edge of sickness. He describes the nausea as though he was just about to have the flu or just getting over the flu-never quite done with it, though. His discouragement factor remains high, patience wavering, and he just wishes it would all go away for him to get back to productivity. This is a long, long ride on the cancer roller coaster. He is progressing, just slower than he hoped it would be.

Still blessed

The weekend brought a one good day to stay home and the other day to enjoy winter's beauty. It also brought good neighbors leaving sweet treats on our doorstep, shoveled steps and sidewalks from the new snow fall, and new faith in the divinity of God. There really is something magical about prayers. Praying for, praying about, praying to, praying with, and so, works. Science does not know how, however, the heart feels and knows it. Dale reports that my meatloaf really "hits the spot" and mellows the nausea. He still battles nausea and feels discouraged with ongoing diarrhea. His skin regenerates itself now so rash is gone. He slowly heals one cell at a time and these annoying side affects will go away ... eventually. Lab work from Friday was very good. Blood levels going in the right direction. No concerns other than clarification from pharmacy to help with nausea conditions. Preventing it is better than trying to treat it. We continue to learn the sciences.

Ups and downs

First full day home brought ups and downs. Up because Dale is home. Down because of extra laundry loads. Up because Dale began to feel somewhat better. Down because nausea was pretty bad this morning. Up because Dale's bone marrow is producing enough cells to take care of the diarrhea rash. Down because there still is diarrhea. Up because the endurance and long suffering is not from cancer treatment. Down because endurance and long suffering is from the ongoing infection he continues to battle. Up because I got out of the house for half an hour today. Down because I was sent to the store for Dale's food cravings. Up because I did a lot of stair climbing. Down because Dale's walking was limited to and from bathrooms.

Slowly progressing

The first day home was uneventful compared to other days. His diarrhea is still there, nausea extreme, and very tired. He ate chicken for lunch, meatloaf for dinner, and said it was the best ever! Eating with nausea is difficult, however, Dale said the nausea medication worked better once he had some food. (Food heals all ailments don't you know!) I think he is just glad to be home. Dale was hoping to feel better quicker, but it looks like it will be a process. We were given instructions again of what to watch for, pharmacy instructions, and a congratulations! You have made it this far! We go in tomorrow for blood labs and next week to meet with his doctor. I was hoping to be able to do labs at Huntsman satellite by us, but with the specialized BMT part, that does not work.  They salted the streets in anticipation of forthcoming snowstorm, so the winter driving begins.

Transplant worked

Dale received more platelets today to regulate the blood clot. He also received his walking orders, i.e. coming home Wednesday; a day earlier than I thought. He is on the mend and doing well. I best go buy some Glucerna, bleach, and (extra-large .... ?).

Extra-large baby wipes

Fully grafted

Two pints of blood today came with good news about Dale's own blood: he is fully grafted. Yesterday's count was 200, today at 1000, yet he still needed blood. I believe the white count was good but the red count not good enough. They were pleased with his quick progress. The earliest he could come home would be Thursday, the latest...couldn't guess. It all depends on blood counts, his skin condition from the diarrhea, and eating. He had a sandwich yesterday, it went right through. Today he stayed with Glucerna shakes-a drink like Ensure for diabetics as they are trying to get him eating and off of the TPN. We went for a short walk in the BMT halls, got back in time for diarrhea. His nurse is incredible and anticipates his needs and makes sure they are met.

Dale feels better, the soreness is less, butt still there. He is positive and upbeat and getting excited about coming home. Me, on the other hand, feel some anxieties setting in. Much could go wrong at home and I get to deal with it in the hopes of knowing what to do at critical times. Granted, I have learned much in the past several weeks, however, the way they talk is a bit intimidating:

• He could turn in a minute, and he won't know it
• He'll have to wear the mask in public all the time
• He'll be good one moment and turn for the worse, the next 
• No sick people around, especially children
• Be careful in what he eats
• Wash everything, peal it, well-done cooking
• Clean the carpets, no dust, sanitize everything!

Perhaps I will just get a case of Glucerna, make him wear gloves and mask 24/7, and watch videos. We incorporated many of the guidelines along the way, however, now it is imperative to do so. But that is not where the anxiety comes from. I think it is the high demand of constant care Dale has gotten used to at Huntsman, that I will be expected to do. They put nurses on shifts for a reason. I think I can, I think I can, I think I can...two weeks, just two weeks and then what? At least the critical weeks will be done.

Catheters

Dale says he is doing better today, but that is after two catheters to empty his bladder and several diarrhea incidents. He seems to be more alert although feel asleep while I was with him in the evening. His appetite allowed him to eat a sandwich and so far, no negatives from eating. The nurse will give him another TPN (food bag) tonight. He already was given platelets but no need for blood yet. The discomfort from diarrhea still is main problem for Dale. Perhaps the bone marrow transplant will graft really soon and he can begin to produce cells he needs to heal. They know it has grafted when his blood levels maintain at 500 for three consecutive days. This morning it was only 200.

Jan! Jan! Jan!

When I called the nurse this morning, she reported it was a better night for Dale: less diarrhea and more sleep. She added that he kept waking up and saying "Jan! Jan! Jan!" Silly nurse, however, I can see him doing that. Dale's blood levels are okay, but the diarrhea has caused horrible skin irritations and the pain is intense. This is the main concern now, therefore, they are treating it carefully so the skin will not become infected and cause even more complications.

Dale has no privacy moments with the nurses although they treat him with great dignity and respect. He is not very talkative but enduring best he can and counting days until it is done, so he can begin counting days until retirement. He spends his time maintaining the suffering, thinking, and hoping for the best.

Weak days

Dale is quite weak as he receives a second dose of platelets today. He also has the TPN food bag dripping inline. He does not get nutrition any other way now. His pain level is 4 and his countenance is quietly enduring it. Each day seems to increase in its difficulty for him. Today he tells me that he is very sore from the diarrhea. I hate to think of that discomfort. Dale seems to be shriveling away this week. His vitals are stable although he rests most of the day without the TV. He must need the quiet. Nurses take good care of my Dale.

Same same

The nurse told me this morning that she was sorry to report that the night was difficult for Dale with lots more diarrhea, nausea, and little sleep. She sounded quite compassionate and hopeful that he would sleep well for several hours to give him respite from the porcelain throne.  Dale told me the same later in the day and is pretty much resigned to know this is how it will be for a few more days. He ended up with good blood counts today, so no extra blood or platelets. One more day down, and then some more.

Carry on

Two pints of blood and a pint of platelets today. Dale says he had a pretty tough day. They will probably have to feed him the TNC or TPN can't remember what it is called, but it is a big whitish bag of nutrients dripped into him. Nausea, diarrhea, add vomit and what do you get? A day with Dale. Nothing out of the ordinary going on, except it is happening to Dale and not some stranger we don't know. Poor guy. This stuff isn't supposed to happen in our household, but it is. Carry on, carry on! The CT scan was also alright. No significant issues reported.

Peach fuzz

It took two bags of platelets today before Dale's numbers stabilized. Diarrhea continues its presence. He has no appetite, yet has maintained weight perhaps because of all the fluids they pump into him. They prepped him for a CT scan this evening, but I don't know results yet. I am sure they are looking for some specifics.

Dale had a number of visitors today which is wonderful for his spirits. I also noted some peach fuzz on his head. He was pleased. I avoid peaches because a childhood trauma with hot peach fuzz, however, I can overcome peach fuzz when it comes to Dale's healing.

Hot peach fuzz for canning (don't know what those white things are, just a picture on internet of those terrible hot fuzzy skins that had to be pealed off)

Although winter is minimal so far, each time snow settled on our sidewalks and steps, someone valiantly cleared the snow. I am reading a thoughtful book that another gave to me at work as a "Candy Gram" SBO's do at Christmas season. We do not know who shovels the snow or who gifted the book, nevertheless, a thoughtful insight to us. It is nice to have people think of us and bring their service, kindness, and thoughts to see us through these stressful days. Dale and I are blessed with friends who care  and step in just as we need a boost. Thanks goes to each of you.