Room 4531 for BMT -6 Day

We got to Huntsman around 9 this morning to begin the chemotherapy part of the bone marrow transplant process. A whole new set of staff and personnel to get to know and trust. He is anxious, but doing alright. I am grateful to the crazy December weather making my drives to Huntsman pleasant. The first chemo is a two hour one and then it is repeated in 12 hours. Dale will have a rest time in the middle, although, the nurse said they always take 4 AM vitals, blood labs, and check on him more frequently for everything else. He has already made it through this far today without too much problem. He reports only a headache. So far, they are keeping the central line in and will monitor it for possible problems beyond the blood clots. Dale's neck appears to be less swollen to me. If there is not progress, the doctor said they would take it out and access blood lines differently. This is -6 day of ?? I don't have their calendar yet, but the doctor explained the days before the actual bone marrow transplant is calculated as negative numbers until BMT begins at day 1. There it is: a new journey in this CANCER adventure.

Room 4531 BMT

Ready to begin BMT chemo

BMT time

Met with BMT doctor today. Dale begins the process on Friday. Five days of chemotherapy that was described as pretty tough. Usual complications include, nausea, vomiting, diarrhea, and headaches. Sounds familiar. Next, the transplant process begins. Dale's harvested stem cells are introduced to his system at that time and all will be well...he will stay at Huntsman for three-four weeks depending on how well he does.  After that, Dale will come home and I will need to stay home. The critical part includes potential infections, extreme blood level and temperature changes, and overall disruption in health condition. I know we could get neighbors to assist in staying with him while I go to work, however, the fewer germs brought home by me and by a variety of people helping out, the better he will be able to begin building his system. During that time, we will continue to have blood lab trips to Huntsman. Perhaps those could be done at the Huntsman Cancer center by us that opens next month. That would be nice.

Nag

Things are going along just fine. Dale has not needed extra days at Huntsman for three weeks now. He has cabin fever and feels well enough that he wants to be out of the house. We have actually ventured out a little. Dale driving even. I have to remind (nag) him that there are germs everywhere, don't touch that, sanitize your hands again, and again, and although he feels okay, there are infections lurking around the outside world awaiting a weak spot to land on. The blood clot appears to be shrinking, but an ultrasound will tell us that next week. Waiting we do until BMT tells us what is next.

Merry Christmas!

It is Christmas Day and we say Merry Christmas to all! This weekend brought visitors, carolers, and family time. We love it when we are able to spend time with friends and family. Thank you to each who continuously remember us. Yesterday, Dale felt well enough to help with house chores, although today, he slept most of the day. A good day to rest. I was able to enjoy Mom's carrot cake, and my sister's summer squash soup left over from a delightful Christmas Eve feast. Not a white Christmas but a Christmas full of love and hope.

Good news

Today's tests went smooth, quicker than scheduled, although it seemed that they took at least a pint of blood in various colored test tubes. Once we got home, the nurse called Dale with the colon biopsy results. Tubular pre-cancerous polyps--which is good news. Not that serious and can be taken care of easily. Don't know when or how but good news. Glad we did not have to wait until late next week to know what the biopsy said.

A Christmas week to enjoy without appointments, tests, labs and hopefully no unexpected or unplanned events for the next several days. Next planned event is appointment with BMT doctor in five days.

Special people in our lives continue to show love, concern, and support. Facebook messages, notes in our message box on our doorstep, thoughtful Christmas cards and gifts, personal visits, and winter snow elves have come at needed times. The timing of all these gifts fascinates me. I have needed you and so I thank you for listening to my subliminal cries.

(Go ahead a click on ads once in awhile. We might get a few pennies for the clicks.)

Are you kidding?

Today brought along many more questions and a day of waiting. Dale was scheduled for his colonoscopy at 7:15 AM and had to wait until 11:00 AM to finally get in. Some scheduling issue. Did not set the day off well. Next, when the doctor told what he found in the colon, it went down hill from there. Not just the "normal" polyps but some unusual ones in many places. He took many for biopsy so we wait for answers late next week.

Dale needed to have his port re-dressed so we headed to 2nd floor clinics we always go to at Huntsman. There they also drew blood labs and as the nurse discussed the lab results and possible reasons for the colon issues, she stopped and looked more carefully at Dale and suggested he may have a blood clot around the port. She sent us to ultra-sound at University (where we happened to meet Dale's nephew who works there, and a friend from Dale's work) to check on the central port lines Dale has in his chest. They have been there since August for access to chemotherapy, blood draws, and all the drip lines he needs during therapy. Sure enough, the technician verified the blood clots.

Are you kidding me? What next? Poor guy. What that means: two weeks of blood thinner injection twice a day, then ultra-sound again. This may or may not slow down the bone marrow transplant process. Don't know that yet. We still go tomorrow for all the tests for BMT and meet with them next week. Perhaps biopsies will be complete by then and we will know more. Sure am glad for the astute nurse that noticed.

P.S. In cleaning up after grandkids, one "o is for olive" toy was found. Yahoo! I might do that again, so they will have to come back to claim it.

Hide the remotes

I wore Dale out today with some sunshine and mall walking. It was not quite as fun as yesterday was with the grandkids. It turned out delightfully. I was told to hide remotes, magazines, get DVDs, and let them use iphones/ipad and all would be well. I threw in some pizza for good measure. It worked. Dale maintained well and enjoyed the company very much.

Today Dale is "prepping" for the colonoscopy tomorrow and recouping from the action of the day. He is doing fine otherwise. We are waiting for tomorrow's test results, meeting with BMT team and moving into the next phase.

Leaning on you

This weekend was full of emotions and feelings for Dale and me. I felt much better on Saturday which enabled me to get household chores done (high on the must-do-list for Dale-and me also, probably) before heading off to meet family for our Christmas luncheon together with spouses. Dale did not accompany me because he does not have the energies to maintain that long. It was pleasant and well needed by me. We shared some tender moments together that our family has and feel, but may not verbalize often. I realize my place in the family is solid and grounded on 56 years of choices, lessons learned (learning), and experiences lived (living). It was good to be together, I need the support and understanding. Consumed with cancer, my personality wavers in survival mode most of the time, therefore, getting out and being surrounded by goodness is necessary.

Dale, on the other hand, has not spoken much, tries to kid around to assimilate feeling okay, but I know he is not. He does not feel social and is fading into self-isolation modes. He wonders what is wrong, why he feels "out-of-sorts" and suggests it could just be the dreary weather, it is December, or perhaps it has something to do with the cancer. Whoa! I think he nailed it! "Something to do with the cancer!" Although, there is some good news, 66% sure mantle cell lymphoma cancer free, there is much to do beyond the completed chemotherapy treatments. Bone marrow transplant is not an easy ride. We are entering into phase 2 of the cancer journey with more unknowns with anxieties building. Dale is needing tender and gentle attention and care.

I need that too, and am getting boosted by many around me. I have a couple weeks off of work for the winter holiday break so neighbors and family time will be top for me to gain strength. Church always does me well. I find strength just being in a congregation of so many who, although have many personal struggles, hopes, disappointments, and celebrations, we each strive to be better people. Yesterday the Primary children performed their annual program and it was delightful. I spoke with many who show me genuine concern and care.

Sunday evening brought Santa Claus (Dale's cousin) and his angelic wife singing praises to us for comfort and joy. Tomorrow evening, grandchildren will grace our home with their giggles and love. Dale and I lean on each of you for sustenance. Thank you.

My turn

Results of Dale's tests so far are good. No sign of mantle cell lymphoma cancer. There is one more next week for the colonoscopy and then we will know more. The doctor clarified why his white blood cells are high and I was satisfied with the answer. He also has the baseline overall checkup to begin the BMT process. We are getting into the next phase of treatments. Once BMT is completed, they give Dale back to the mantle cell lymphoma doctor's care for the next phase. She seemed pretty optimistic as she spoke with us. We were pleased.

So pleased that I allowed Dale to drive home. I was in no condition to drive. I felt lousy. And he was feeling good. I got carsick, though, because of acceleration and quick stops and changing lanes all the time! The night brought me and the bathroom toilet becoming intimate friends, or perhaps enemies. Scared Dale! I stayed home. Feel better now, but not really. Must be a combination of many things. Smog and yuck outside, Dale with a "clean slate" for now, and complete exhaustion. Poor guy, I interfered with his rest and relaxation for a day when I should have been at work. Missed our Holiday staff luncheon which I look forward to each year. Too bad for me, but good that I did not go. It would have been ugly.

One laundry load

Dale's day was uneventful--except for one laundry load. That concerns me. His system expels unexpectedly and unpredictably. I think it is more than the chemo. I believe there is something else going on and it has not been fully addressed or treated yet. If it was, this would not be happening still.

Today we go to his mantle cell doctor for test results and consultation on his progress. Then he will be turned over to the bone marrow transplant team and the next phase of adventures begins.

Angels and Harps

A gift from Huntsman Cancer Hospital yesterday came from a well known harp musician who also plays for the Mormon Tabernacle Choir. It was beautiful and well appreciated by all in waiting rooms and coming and going to and fro throughout the building. She played so well that Dale feels the best he has felt today. Yahoo! May angels watch over him today, because I am off to work. Happy Birthday, Mom (on 12/14)! 

Harpist was playing at Huntsman, no flute-just a picture from web.

Cold Cereal

Yes, Dale is all worn out from the day's tests. Hope he passes them. He spoke with the BMT folks to set up his time there. Apparently, it will start with a battery of medical tests, EKG and such, then 5 days of chemo in the BMT center, and then, I don't know anything else. A new adventure will begin. In the meantime, hang in there, produce the appropriate blood cells so not to need transfusions again and stay away from neutropenia. (Look that one up!) In other words, do not do anything that may compromise Dale's non-existent immune system and cause infections. Keep breathing, coughing, sneezing to yourselves; scrub, peel, and cook food well done. No raw anything, i.e. nuts, berries, grapes, celery. Try peeling a raspberry or grape. Pasteurized dairy, no aged cheeses, plain, simple and boring foods. Good thing Dale likes cold cereal.

Three times a day may get old, but it's safe!

Snow elves have taken care of our sidewalks and steps to our home twice today. Once early this morning after the first snow, and again this evening after a day of light snow not melting from our north facing home. How sweet it is to have so many people continue to think what they can do to assist us. I have missed two days of work and know I have also missed what is going on. I feel a bit lost, yet grateful, and know that all is well because I work with great people.

Learn about science

Dale wore out yesterday as we proceeded with blood draws and the waiting game. Counts were okay, red  blood reasonable, (for a mantle cell patient anyway) white blood high, (a bit disconcerting) and platelets fine. This is the first time this crew of nurses had seen Dale since the "episode" and they all commented how good he looked--considering. Once we got home, he rested most of the evening. If yesterday was tiring, today will be down right exhausting to Dale. Traveling, waiting, sitting, walking, waiting sitting etc. does him in for the day.

Today brings two more tests; one with radiology the other bone marrow biopsy. The PT scan does not allow for food for several hours, so dinner for Dale was late to sustain longer. Once checked in at radiology, he will be given a "drink" of substance that the xray will track. Then he has to wait for two hours for it to get into his system. How they figure this stuff out is fascinating. Maybe I will go back to school and learn science!

Week of tests

Today we go to Huntsman for blood labs and have to stick around for the results, lest Dale needs another transfusion. I don't think he will since his energy and coherence are better now. Previously, the home-care nurse could have done the labs, but I suspect since Dale blacked out last week while blood was drawn, more precautions are taken. They also scheduled PT and bone marrow biopsy for tomorrow. By Thursday's appointment with the doctor, we could have a better idea of what is next, although the colonoscopy is not for another 10 days.

We are forever grateful to the kind souls around us who continuously lift our spirits and smile with us as we trudge along this medical pathway to who knows where, what, when, or how. I sometimes hope that I can focus on other things, but alas! Cancer care always prevails. 

Home again

I got a call this morning telling me that Dale was ready to come home. Yippee! He is still incredibly tired and weak, but happy to be home. Schedule ahead is Monday to Huntsman for blood labs, Tuesday to IMC in Murray for PT scan, then later for bone marrow biopsy at Huntsman, and Thursday back to Huntsman for more blood labs and doctor appointment. We will have lots of fun! Nice to have things to do. It is great to have Dale home, although he is somewhat disappointed in all the waiting and that he is not feeling any better. We spent the evening home watching a movie, together, and that is good.

From 4540 to 4524 with 4 pints

Dale was moved to room 4524 which is in the chemotherapy section of rooms he normally stays. They did not do this until someone else checked out, therefore opening a room for his care. Since he had the chaotic episode yesterday, they put a heart monitor on him for 24 hours, then determined the heart was just fine. In the meantime, platelets and 4 pints of blood later, Dale feels much better. Antibiotics drip constantly into him and his temperature is in control, now. He is the talk of the staff & nurses today now he is back to his regular area. Many come to his room to say hello, heard about yesterday, how are you doing today....

When Dale feels better, he is talkative and social. That he is today. Blood does him wonders.

No snow yet, but no leaves either.

I am grateful to the wonderful, dry, albeit cold, weather we are having now. Makes for pleasant drives to and fro.

Stay home with me

Dale asked me to stay home with him today. "As you wish," I said. It was a good thing I did. He was very weak, unsteady, and nauseated. By the time the home-care nurse made it over for the blood labs, he developed a fever and it began to rise. We called Huntsman, who said to come on in. Once we got there, he was taken into the clinic to draw labs from both arms to better locate where bacteria was located. The right arm was completed then they began on the left. He gagged, vomited, and passed out. That is when the action began. I do not know how long he was out because I stepped aside to get out of the way so the teams had plenty of space to do what they are trained to do. Several of the staff checked on me almost as much as they worked with Dale. They did well with both of us.

After the chaos calmed, they moved him to the new Huntsman Hospital Emergency Rooms to stabilize and assess. We walked through back halls and into another room with more medical staff. We were only there for 45 minutes or so, when they were able to find a room for him in the new BMT (Bone Marrow Transplant) wing of rooms. It should have been in the ICU but it was full, and BMT is probably a better place for Dale with his lack of a functioning immune system. All sorts of familiar faces came by to check on him. They did a great job. He will be in this room until another opens up for him. Probably will stay for at least 4-5 days to eradicate the infection.

Glad I stayed home.

Reflection of room 4540 with rock walls 

Not too happy to be there but happy that he got there

Normal days

A teacher expressed his understanding and care for Dale and I as we venture valiantly through this abyss of cancer. A staff member questioned what happens if I get sick. Fortunately, that question was overheard by another, giving the answer: "She'd have to live with us!"

I am set! No worries. Friends are taking care of me, cuz I sure need taking care of as I take care of Dale. Kindness, smiles, I care, and so on, gives strength. Thank you.

It seems sad, too, that Dale and I are too adjusted.

"I just don't feel too well, but its okay, I'll be fine after the home-care nurse comes today for lab work."
"Okay, give me a call when you find out if you need a blood transfusion. Have a good day! Luv you, bye."
"I don't want to bother you at work, but okay, I'll call. Luv, you, bye."

"Oh dear, did you have a situation today?"
"Yeah, twice."
"Sorry, Honey. How do you feel now? Have you eaten anything? What about your medications?"
"I'm okay, just tired. Cheese and some other stuff."
"No meds yet, huh?"
"How was work?"

This is our life right now and our discussions seem so regular. I recall, looking around at all the normality going on around me and wondering how people can be so normal when my life turned upside down. I am very grateful for regular things happening, though. Dale and I do as many daily regular things as possible together. For me, the interacting with varieties of students, teachers, and parents, working with the politics, economics, and promises bring a sort of understanding and support of those of us that need to feel, it really is just another day. Yet that day can be cherished more so, with the non-normality going on inside our worlds. Sadly, though, Dale is not able to go to work or much else to get a feeling of normal. Normal is good, but complacency with his health condition is not. We need to be alert enough to notice changes that warrant critical care times. I believe we are, the adjustments we make are the survival skills to do so. It takes 150% all the time.

Waiting

The home care nurse came yesterday, drew blood, took it to local hospital labs, and they faxed information to Huntsman. Results indicated Dale needed platelets, so he called me at work and we made the journey to Huntsman for the platelet transfusion. He feels slightly better, but I suppose there will be blood transfusion within the next week or so. Dale rests all day but really does not feel well. His mind is full of thoughts to heal, yet is plagued with weariness. He tries hard to be positive, not "get in my way," and be a good patient. Nurses see him and greet him cheerfully by name, some even shaking their heads in a look of "Dale! Good to see you, except I am so sorry you are going through this ordeal. I will do what I can to make it easier for you." That helps him a lot.

I feel forever grateful to my team at work. The guys are phenomenally supportive and understanding of my ineptness, spontaneous and abrupt dismissal from the day, and respect of our needs. Faculty and staff fit right in with a huge basket of gratitude. I feel that Dale and I are "handling" things pretty well, actually, but oh my goodness! If we did not have the support of friends, families, neighbors, co-workers, staff at Huntsman, and all the positive thoughts and prayers for us, it would be so so much harder. We get a hint of hope, in each moment of care and service we receive.

This month has tests ahead to determine what treatment is next, so in the meantime, we wait. We wait for chemo to go away from his system. We wait for bone marrow to produce healthy blood again. We wait for answers of each day's questions. We wait for the day when this is done. We wait for completed tests. We wait for tests results. We wait for further instructions from his doctors. We wait.

Laundry loads

Two extra loads of laundry on Saturday made for an exciting day for Dale. Always on the go. We believe it to be in control today-better at least. The weakness has set in, voice down, but okay. He is doing the best he can as his body gets rid of chemo. Although this may be the final chemo treatment, Dale still has to go through what happens after each chemotherapy session. He said he dreamed about his hair growing back, already but it did not happen, yet. Still lots of treatments left, we just do not know what that means yet.

Then and now

Today, I felt good, and Dale tried to feel well, but the after chemo effects have begun. Tired, weak voice, diarrhea. Hair has not gone back yet, but weight is still down. It comes down to a day at a time, sometimes less of a day and things turn around in either direction. Dale tries to keep positive even on days as this when he has such low energy and wants to "get things done." He gets something in his mind that needs attention and so it is, until it is completed. My focus is to keep him comfortable and without added stressors or negativisms. He really needs continuous care and consideration to keep well. That's what I do. Take care that Dale is taken care of. Look at his eyes. Hope in first picture, weariness in the next.

Week before chemotherapy began

Today, may be last of chemotherapy

Celebrations

It feels like a celebration today! Dale is home and we think the final chemotherapy is now completed. Yippee. He has energy, feeling positive, and just glad to be out of the hospital. They are pretty nice, however, there is no place like home. We are relaxing, watching the lighting of the Rockefeller Center Christmas Tree, and enjoying a bit of "regular" night together. Sure, there are lots of medications, blood labs, and one day at a time, but it feels like a milestone for a celebration. Dale is hoping that his hair will begin to grow back, he can keep his weight down, and that his intellectual level rises. Good luck on each one of those hopes! I hope the cancer stays away.

Two pints of blood

I am so confused with Dale's blood levels. He had to wait two extra days before beginning the next round of chemo due to high blood levels. Today, he received two pints of blood because of low blood levels. Chemo is completed for this round, however, blood chemo level must be 0.05 before he can come home. I think he told me it was at 0.5 or 0.7, therefore, he has to drop several points before being released. How does he do that?

Dale was tired when I arrived with one pint of blood finishing up and by the time I left, he was more coherent and feeling better as the second pint began dripping into him. Each new pint of blood brings careful monitoring by the staff: vitals are taken each 15 minutes ensuring stability and watching for blood transfusion reactions.  I still say he is a science project continuously collecting data, adjusting, administering treatment, collecting data, adjusting, administering treatment, and so on and so on.

Research is important, and his data will be collected and added to the whole for the betterment of cancer treatment. Perhaps my research will be important somewhere to someone--once I get it going again. Fifteen minutes here, 1/2 hour there, makes for slow progress. But progress, indeed.

Immunization shots

Dale had a day of mostly rest. My visit to him interrupted his napping times or I was boring him with my daily reports because he kept falling asleep amidst my grand and exuberant storytelling of the day. Today I felt the burdens of cancer slightly lightened. Perhaps because this may be the final chemotherapy cycle. Each doctor is talking positively about Dale's progress. Appointments for bone marrow biopsy, colonoscopy, and PT scans are in the next couple of weeks to determine progress and when the next phase (bone marrow transplant) begins. We did not think this would happen until March or April, so this is very good information. However, not to get all excited yet, I will wait for the results of tests for higher levels of excitement. I will, though, relish in the possibility of less time in chemotherapy for Dale. If you know of, are, or knew of someone experiencing(ed) chemo, give them as much love, patience, hope, and comfort as you can muster together to do. It is a tough ride.

Once this whole treatment process is completed, Dale's immune system will be as it was 60 years ago--or in other words--he will have to get re-immunized for diseases like small pox, chicken pox, polio, whooping cough, measles, mumps, etc. I had not thought of that at all, but it makes sense. Kill the cancer that has killed the immune system, then rebuild the immune system. What will that be like? Reactions to immunizations for sure, but this should be better than getting the above diseases as an adult--I can only hope!

Dale's arm will be a pin-cushion from upcoming immunization shots

A friend and her daughters assisted me with house work the other day. Appreciation granted! We got it done in record time and it feels great.  It is better to clean when Dale is not around because of floating dust and breathing people (and company and direct help to me is nice).

Lots of hope

Dale is not feeling well today. Tired, weak, headache, swollen bloodshot eyes. Heart rate up,  two units of oxygen, and now nausea setting in. When I arrived Dale had a visitor, however, Dale said very little. That is an indication he feels lousy. He is usually cordial, complimentary, and friendly. He is maintaining the best he can. Hopefully, he will get a good night's sleep. Sleep always helps. Chemotherapy does not treat the recipient kindly.

I look forward to the day that we are greeted as Dale & Jan, not "how's Dale doing now?" I wrote another  blog about cancer consuming us, well, it does. There is more to us than cancer, it is just high on the consumption list at this time. For awhile, it was one moment at a time, now, it is now one 1/2 a day at a time, that means improvement.  We talk about what we will do after I also retire, and it sounds fun, so we had better get there--together! That means Dale is feeling he will make it through the cancer for a few more years.  There is hope. Lots of it.

Room 4514 & 3B

Dale's next round has begun. His voice indicated it was time to be there. As we walked into his room, nurses, physicians, and CNAs greeted him heartily with great cheer: "Dale! So good to see you!" One called him "Trouble" although said so with a smile as she told him she was her nurse for the day. He makes it as best he can while being cared for. That makes the experience go smoother. We both feel better about the treatments now the infection is gone. What a battle that was! He is scheduled for a few follow-up appointments to check out how the treatment is going and to determine how many more chemotherapy rounds and when to begin the bone marrow transplant process. It may be quicker than we thought! Yahoo!

Anxious to get going

Dale loves this side of the building

Gratitude

Thanksgiving Day brings a nation to memories, hope, and gratitude towards others. Take this day to reflect on gratitude, even if it is tough to do so.

• I am grateful that Dale is doing well enough that his physician delayed the next phase of chemotherapy until perhaps tomorrow
• I am grateful that his blood levels are high for a mantle cell patient, therefore the doctor felt it best to let blood levels drop further before chemotherapy knocks them down again
• I am grateful for flexibility, patience, and endurance
• I am grateful that I have a few extra hours today to work on my proposal due to change in Dale's schedule (travel and time at Huntsman Hospital), and delay of family dinner a few hours past original time
• I am grateful that I have no cooking assignments for said dinner with family (they are all much better chefs than I)
• I am grateful for the many friends, neighbors, co-workers, and family keeping us in their thoughts and prayers
• I am grateful to all who continuously want to give of their time and energy to serve us in any way the can
• I am grateful for gratitude; if gives one opportunity to put things into perspective and be glad

Smile

I listen to classical music 99% of the time when I listen to music. Friends make fun of me. There is a radio station advertisement on now that says something like "people think they have to have a PhD to understand classical music..." maybe so! As I listen, I create my own feelings, words if I want, and enjoy the harmony, richness, and depth of tunes played. Many instruments work in perfection and shape the melodies of a symphony that I find enjoyable and relaxing. What is there to make fun of? A few days ago on one of my trips to Huntsman center alone in my car, I enjoyed such music, but this time it included a discussion with a violinist and her newest CD. The title song, although not a classical orchestra tune Smile brought many good thoughts to me in my processing of another Huntsman trip. The tenderness of the lone violin playing Smile was gorgeous! I felt the words ring through me from childhood memories of Nat King Cole's singing.


Smile though your heart is aching 
Smile even though it's breaking 
When there are clouds in the sky, you'll get by 
If you smile through your fear and sorrow 
Smile and maybe tomorrow 
You'll see the sun come shining through for you 

Light up your face with gladness 
Hide every trace of sadness 
Although a tear may be ever so near 
That's the time you must keep on trying 
Smile, what's the use of crying? 
You'll find that life is still worthwhile 
If you just smile 

That's the time you must keep on trying 
Smile, what's the use of crying? 
You'll find that life is still worthwhile 
If you just smile


I needed that song in my processing moments and although it happened a few days ago, I feel it is appropriate to address. Smiles work. I need to do more. I actually giggled heartily today, felt good. There are many smile-worthy actions around me. Sometimes I forget to notice because I "wallow in my own sorrows."  Just smile. 


And by the way, Dale is doing just fine. One more day until 3B chemo. He is weak, but manages to spend his time talking to friends on his phone and making plans for the future. Good job, Dale!

Root beer float

Since Dale quit taking the anti-biotics that may cause the side effects, he has felt better. He has said a few times that he is getting tired of this whole deal. His low balance, weakness, and constant tremors seem to take over feeling well. His mind is good, which means time is slow to pass. TV gets old. He says reading is difficult because of his tremors so the book shakes constantly. Audio books elude him because that involves technology he does not have strength (desire?) to learn.

Sunday, again was good. We live in a great neighborhood with people who have depth and love for another. One bit of bad news, though. The retired dentist who has served us so well, is in the hospital with pulmonary embolism. He is doing well and Dale and he can converse on the phones while they are healing. He helped me diagnose my mouth sores when he visited Saturday. Stress. Yes, stress causes the sores and tenderness I have. Imagine me having stress! Maybe that will help me to quit eating. Cold feels good and perhaps fizz. Sounds like root beer floats to me.

The cure for mouth sores!!??!!

Sick of being sick

I made it through a day of work by doing things that could be done at any time, took little thought and energy, and kept me awake. I got home later than I like the night before because I was able to put in my token evening activity duty at school making for a tired day. I hoped to come home, have dinner, and slowly work on Saturday chores. But alas, Dale felt really weak and waited for me to come home to transport to Huntsman. Diarrhea had set in again therefore, more concerns came in. Off we went to Huntsman center where we were able to go to the regular offices for blood work and such. They needed a sample of his diarrhea, and of course could not produce. Great! We went home and when he could, put it in a container for delivery the next morning. And of course, I drove once again to Huntsman with a treat for the lab people to see what the deal is and why he does so horribly--we think--with one of the anti-bodies he takes. Dale's day had lots of sleep, a good appetite, and a couple of visitors. 

Dale's attitude today, had some, "I am getting tired of being so sick and tired!" Reasonably so. I believe there has been many days of learning things like, long suffering, enduring to the end, and patience. He has done well with this cancer thing and although I have the balancing tasks of his cancer care, I can't imagine what is going on in his heart, mind, and spirits. His comfort level is top of all priorities. There is no list to check, no agendas, just whatever makes Dale comfortable. 

Cancer consumes us

Home care blood labs today. Dale does not sleep at night, therefore, my sleeps also lacks. June, July, August, September, October, and over half of November and here we are. It almost seems this is just the way it is, routines in place, waiting for next relapse, hope this will end with a happy note, going to chemo, or coming out of chemo, schedules changing, what, where, how, who....

I told a co-worker's wife that I function at 56% most of the time. That's a lie. "Function" is overstated. We SURVIVE at perhaps 56%. Truly. Survival mode. Maintain as best we can. I added "we" as part of this statement, because we both are running as fast as we can, and exhaust ourselves daily. It is hard to describe the total commitment cancer has on us. It consumes our existence.  I am glad I am able to continuing working (if that is what if is called when I am gone) not only because of the great people around me, but my mind can focus just a bit on something else for a moment. However, cancer is always there, always.

Dale works hard each moment to maintain his positiveness. He does not complain or demand. He is patient, gentle, and very grateful for anyone he sees or talks with. He is "functioning" much higher than I.

Balloons & lungs

Dale received two pints of blood yesterday so feels better, however, it appears that pneumonia may be around the corner, so they took Xrays to verify. He needs to use the blowing apparatus several times a day to strengthen lungs and move around more. Sounds like good advice to all of us, actually, except balloons may be an alternative idea.

Dale's night was painful so I anticipate a difficult day for him. I will be checking in on him frequently. Huntsman now also has an Urgent Care office during the week days for issues such as what I anticipate coming soon. Tomorrow the home care nurse will do another blood lab checking on levels, then we will know what happens next for the weekend. He has, though, been doing well overall. 3A and I expect 3B to be nothing compared to both 1A/1B & 2A/2B.  Next week he  begins 3B.

Old friends meet

Back in the swing of Huntsman transportation trips today. I got home and Dale's blood levels were low enough that he was requested to return to Huntsman today for more lab work before the double transfusion tomorrow. Off we go. While there, a volunteer couple walked around offering juice and treats for those waiting and waiting. I had to refresh their minds of my youthfulness versus their wisdom in age, as we updated each other of family happenings. Memories from the past came rushing in as we reminisced about the day my dad carried a piano down their stairs by himself, Bear Lake trips, and happy days of years ago. Crazy place to meet good folks.

We will head to Huntsman in the early morning hours, Dale will remain there for transfusions and then a friend has already arranged to pick him up. Thanks for friends and neighbors.

Taking time

I am taking some time off, therefore, there will be a gap in the blog updates. Dale is doing fine, best yet since he began the chemotherapy. His daughter  and I are on a business trip together and leaving Dale all by himself. Stop by, call, check on him if possible. We have asked for support of neighbors to check in on him and he has phone numbers to call if he needs transportation to Huntsman or ER. Home care nurse will be in both mornings I am gone, so that is taken care of but I would not be leaving if he was not well enough to be alone for the two days.

Smoke alarms: had the gas company service come to check things out. He found nothing and suggested using separate smoke alarms and Carbon Monoxide alarms. I have purchased them and will replace when I get back. Any volunteers to lift and climb the big ladder to do the upstairs one?? I will figure that part out mid-week or maybe next weekend. Don't want it to go off while Dale is home alone. He would try to get the ladder out himself, climb it and boom! No more cancer treatments for awhile, he'd be in a body cast.

Can't cook any more

Woke up to another smoke alarm going off. I will not be cooking any more. Cold cereal. Peeled fruits or vegetables. Canned foods. Not even toast. Microwave maybe. I bought new alarms for the whole house. I think it may be the dust of three years, constant dirt around us, and construction debris.

Blood work this morning. Perhaps transfusion, but Dale seems to be okay, not the usual low energy before transfusions. That is good.

Smoke Alarms

Smoke alarms, fragile Jan, and cancer don't mix well at our home. Got Dale home, safe and in pretty good spirits. I fixed a dinner that he said was the best he had ever eaten! It went down hill from there. Smoke alarm went off while cooking, so I opened doors, turned fans on and waited for it to go off. Of course, the main room alarm is extremely high. I reset it, several times, with an extension post. It stayed quiet for 2-3 minutes. Downstairs alarm synchronized with upstairs. Nice. I got the huge and heavy ladder out, changed the batterie and hoped for peace. No. Called a friend, except I had one number missing on her phone number, so I Facebooked her hoping she would check it for messages. She did and tender mercies continued with her and husband coming twice to the house. Twice??? Yes. He replaced all batteries and it was quiet for a couple hours. Although as soon as I got to bed, albeit 7:45 PM, it bleeped again. Horrors! He lithely climbed the ladder and inspected once again, took it off and we all decided time to just replace the things! My night went further down from there. I will try to be nice today.

Only way to silence these things is to disengage the entire alarm!

But Dale is okay. Lots of blood draws before next round of chemo to check on levels and needs for transfusions. He is a good and patient man and is finding that, I have weak moments.

Turducken

Chemotherapy has some odd side effects. Dale must be watching Food Channel which probably introduced him to turducken. He can't let it go. Turducken is turkey, duck, and chicken rolled into a turducken, common in Louisiana but unheard of here. Turducken is in his every conversation. Nurse this morning reported he is giggling about his turducken find and keeps telling everyone he anticipates his Thanksgiving turducken meal from Huntsman's kitchens as he will be in the 3B chemo cycle during Thanksgiving. Good luck on that, Huntsman chefs.

Turducken

 He thinks he will be released by 8 AM this morning, nurse told me not so! Today, yes, but not that early. Apparently, his spirits are very good, he anticipates a good healing of 15 days home and back again. Treatments are going well and he begins to see that this mantle cell journey is but a moment in time.

Last 3 days

The last 3 days of 3A is hard on Dale. It is a DNA regulator of some sort that makes the DNA stop reproducing itself and the cancer too. Dr. said it has been used with cancer patience for a long time and works well, however, it is very hard on Dale. Nausea, diarrhea, and headaches remain his friends for the duration of its transmission. When I got to Huntsman today, he looked puffy, hot, and not feeling well at all.

Sense of humor gone for a few hours

Dale livened up eventually once he had his favorite visitor(s) and nurse there. People are his friends and he needs us. Call if you can, visit, if you are able. It has got to be a tough job living in hospital gowns, tethered to a post of drugs, and coping with all that cancer brings to one's mind. He does okay overall, but really loves to talk with friends and family.

Here is another view from Dale's room from Sunday morning. Beautiful clear wintery day. It amazes me how beautiful snow cleans the city. I am glad for winter fresh and clean air.

Dusting of snow in the valley

As I drove home tonight, my thoughts were on (well, driving mostly) but also on the many folks who consistently ask to help. Many make sure specific things are done, like winterizing the sprinkling system, or helping with snow removal now that winter has come or calls and visits . Thinking ahead for us. Thank you. Yes, we still need people to help us in a variety of ways. I am blessed to have such good men and women surrounding me. I am a private person normally. However, now people know more about me and my world than ever before; my vulnerabilities, weaknesses, fears, frustrations, faith, hopes, and a strength or two occasionally.  This mantle cell journey is public by design and it is our 100% existence. The thought processing of the blog stimulates healthy debriefing of conditions, emotions, and concerns. Thank you for reading and supporting us both--even though mantle-cell-R-we.

Infection caused the grief

The doctors told Dale that his infection that has lingered on since about the beginning of his treatments is now gone, gone, gone, hopefully never to return. His body tried to fight the infection but it was more than it could handle, thus, diarrhea, slowed blood productions, and other complications. As all goes well, from this point on, treatments will be less awful. This round continues to do okay. He complains of slight headache, nausea, and loneliness, but is okay. I spent a couple of hours early this morning with him-a pleasant visit for both of us.

Dale speaks of "coming home." Each Sunday, I feel that I am home. Wonderful people around us. I learn the depth of these neighbors and friends all the time. I think we are home. I feel that I may be up to about 50% now, better, but not all there yet.

Chance of snow at 20% or is it me?

Dale reports that although he does not feel all that well, he is doing just fine with this round of chemo. They may give him a transfusion of blood tomorrow or Monday because blood levels are getting low. That makes sense to me, take care of the low blood before he goes home. I believe they are adjusting the timing on the chemo formulas and it may take one more day to do the complete cycle this week.

Dale has made a friend of a fellow mantle cell patient. His treatment is not quite as intensive as Dale's with only 4 or 5 day treatments versus Dale's 6-8 day treatments. Lucky guy. That is good for Dale to converse with another patient. They can keep each other company and deal with it all. We both appreciate the visitors, calls, and prayers of everyone. Thank you!

The first snow looked picturesque to me this morning. 

I don't really realize what a mess I am until something like yesterday's parent meeting. It was tense and I felt bullied. After a few hours of processing and feeling totally useless, I drove home. I spent the evening doing virtually nothing: turned my music up and worked on a puzzle. It was a fragile night for me. Saturday, I cleaned the garage--getting it ready with the winter tools. Felt good. Had lunch with Mom, sister, and niece. That was good also. I believe my vessel is at 20%. I am regrouping and glad to have an extra hour from Daylight Savings to do so.

Drip, drip, drip

Dale is doing very well. There have not been events getting in the way of treatment. He does, however, have more than chemo dripping. One drip is for kidney support, another for liver support, always a hydration drip, and the chemotherapy in a variety of its formulas. His heart rate is in control--it has been very high for about 10 days or so. Kidney count better and they will tell him more about infection levels today. They reported that he needed sleep assistance at about 2 AM. Strange, so did I. It is strange, but when Dale is at Huntsman, I seem to connect with his condition especially at night. My night's are restless when he has complications. I got up at 3 AM and walked 3 miles on the treadmill. Didn't work. There is still more of me than I want to have.

So far pretty good

The chemo is dripping. Dale is doing well. Progress is positive. The night brought no trauma. One down. Seven to go. Nothing else to report. That is good.

Ready to have chemotherapy

Dale is well rested since last chemotherapy and ready to go again. He met a fellow mantle cell patient who only has to do four day chemotherapies. Whatever!

Room 4505

Cycle 3A. Kidneys not functioning as they should.

3A beginning

The 3A round of chemo scheduled for today. We think it will happen as planned, although last week it did not because of an infection Dale had. He has "healed" pretty well with the extra week off of treatment, but is ready to get going again, just to get it over with, really. I will post room and such later today when I know what it is and  other points of interest as I see it. Next phase is about to begin. On we go.

Hello World!

People throughout the world are reading this blog. Sad, because that means there are people out there that need to know more about Mantle Cell Lymphoma and have used the internet to find information. There just is not enough current information on this cancer. There are references to many that have survived, or not survived their cancers and some probably had mantle cell, but it was not differentiated from other cancers yet. The blog is a history, a reference, a report, a story. For those global readers, may God bless you in your personal journeys in the Mantle Cell Lymphoma world, you will need all you can and will receive.

Today, as I thought about the blogging thing, I feel it tells the love story between the two of us during our new part of life. The most important thing I have learned, thus far anyway, is that there are some things that do not matter, and others that matter a lot. These things will probably be different for everyone, but for me, caring for one another is at the top of the list. Several posts ago, I wrote that "it is not about me" and it isn't. It is about everyone else. And in my career; my forever theme stands as "it is all about the kids, everything we do should be centered around the kids, everything."

Today, by the way, we met with Dale's "regular" doctor who we had not seen since the original diagnosis in June. He was very concerned and apologetic that we were going through this experience. He verified the paperwork necessary for home bound health care, and we were on our way.

Up all night

Dale was up all night. I think he is getting anxious for the next round and if he is able to stay this week. Since he was up, my sleep was minimal...my mind all over the place with "what ifs," "when it happens, I will have to," and "what will I do with/when..." Thoughts have been going in both directions, when remission sets in and when it is finished. I think also of the many great things and experiences we share. We do well together and get better all the time.

Still home and well enough to be there

Seems to be going just fine. Last day of the antibiotics. Wit is sharp and appetite is fine. We had good visitors yesterday, all within 15 minutes of each other. Dale must have been sending out signs of some sort that brought the friends over. Nice job! It was good to visit with people.

I seem to be handling things better now. Perhaps it is because we have an idea of what to expect and understand this journey a bit more. Or perhaps it is because so many people are caring and praying for us. Probably both! And we appreciate everyone's thoughts and caring services to us.

It has been nice to have Dale home for an extra week, except that even though the infection he obtained is being attacked, what about that cancer thing that got him here in the first place? Is that in a dormant stage or slowly attacking his body?

We have a doctor's appointment on Monday with his "regular" physician that Huntsman set up. Don't know what that will be for. I suspect paperwork, insurance needs and general health reporting.

Jail time

On my way out to work Friday morning, I stated to Dale that it must feel like he is in prison. He worked for 20+ years as adult probation & parole agent and knows prisons and jails. He quickly replied; "Yes, but my cell mate has work release and leaves every day!" True in a couple of ways; he is confounded at home, must be escorted in safety to hospitals, and is limited in his activities in the home. Downstairs is off limits unless I am home to assist him up and down the stairs. Myself, as the cell mate, once my work release is over for a day, come directly home and begin the care-taking needs with my schedule of activities revolving around medication administration needs, emergency transportations, and chemotherapy treatment schedules. So it is a bit of confinement for both of us.

However, we are not alone in this world. There are many (mostly women) that are care takers of spouses, children, friends and their main hope for a day is a successful, uneventful, and medical emergency free day. As I talk with Mom, my world has become like hers has been for a number of years, with increases in needs as years provide decreases in my step-father's health. We started to number a few of her friends and acquaintances that are in the same situation.  The men are failing, the women prevailing. Hmmm.

Health for Dale today is okay, although he is complaining that he does not feel right. That means many things. I hope the antibiotics are working like they should be, that he can make it until the next round of chemotherapy, and that round 3A will be smooth. Extra time between rounds is good in that he has more time to recover from the last round of chemo, however, it makes for the process to go on and on and on with the end not foreseeable because the "scheduled calendar" changes and Dale has more time at home in his cell, as he tries to be pleasant, uncomplaining and compliant with doctor's orders.

One more day down

Mellow day. No mishaps. No events. Yahoo!

Sanitized the front room last night and Dale's bathroom last week. Everyone should do that at least twice a year. Hire it out if you can. Stimulate the economy-create jobs. Dust gathers. Crumbs are found. Coins sucked in by the vacuum. But it is done. Should do master bedroom and bath. One room is enough for this week.

Maybe next week

I took Dale to Huntsman for his Wednesday to Wednesday start of chemo, but they sent him back home. The infection treatment must run its course, so I traveled one more time to Huntsman and brought him back home. He is feeling okay, although, he reports that his feet and legs are somewhat numb and uncomfortable. His medications were adjusted to half of what it was. Hopefully, still doing what it needs to do to eradicate the infection.

There is a nice article in the paper about the Huntsman Center. They have expanded and opened up the bone marrow transplant sections. Dale will go there instead of at the U's hospital. It is a nice place. They take care to provide for the cancer patients. http://www.deseretnews.com/article/705393213/Huntsman-Cancer-Institutes-latest-expansion-is-evidence-of-hope-that-a-cure-will-be-found.html

I got an email from Mom. She called me all sorts of names (and titles), and told me to get a massage and facial to assist in taking care of the caretaker. I just might have to take her up on that idea...but when can I fit that into the day?

At 78% production

Dale did well on his own today, was serenaded by our 71 year old neighbor and his newly found love learning to play the banjo, several friends from the young singles group, and calls from many friends. That really, really helps, gives hope, and purpose to keep going. We giggled many times this evening. It felt good. Tomorrow begins 3A (8 days of treatment). He is ready and not anxious as other cycles. That I am glad for. By the time I got home, though, Dale was doing another load of laundry. A couple of bouts with diarrhea, but did okay. No lightheaded episodes today.

Several people came to me today. One saying that my coloring looks better and that it appears that I must be rested. Another said I looked kind of pale and should probably go home. Later, one more told me she didn't think I looked too well, gave me a big hug and made sure I could carry on. Yet one more, actually held my face and asked if I was alright! I'm going with the first one of better coloring and rested! I am so confused. Can't I just be alright and do what needs to be done? I actually felt dumpy and tired today. My production rate was at about 78%, however, was able to check off four things on my list at work. Not telling how long that list is...

All-in-all, Dale and I are doing alright. We have learned much about this whole deal and am carrying on okay. Perhaps some of my stressors can be lessoned as we continue with cancer treatment routines and I can function more efficiently/effectively. I will transport him to Huntsman in the morning for his labs and admissions for next round. We both thank everyone for the continuous, genuine concern, and care for both of us. It is working. Thank you!! It is felt and helps us both to get up each day.

Arrrgh!

Left Dale home all day long by himself. He was able to change the medication line and flush it out all by himself after I hooked it up in the morning. It is awkward, but doable. A bit of independence for him. That is a good thing. Dale reported to me, however, that he had a lightheaded fainting episode, no falling or stumbling, but enough he had to stay put, not move further and gain balance and sight. He then took his blood pressure and it was low. His eyes have the dark circles and he is going downhill. Get through today, and tomorrow begins the next chemo cycle 3A. A friend brought dinner to him, I am glad for that also. People continue to ask what they can do and dinners are a good thing every so often.

Today, as I pondered our "situation" at this time, I have thought of the many things Dale has taught me and I am grateful. We make a pretty balance couple--except I presently have one complaint. He now weighs less than me and I have found all that he has lost. I was hoping the stress would somehow work the other way for me. But no!!! Arrrgh!

Old wrinkled eyes

I noticed Dale's eyes today are looking old and wrinkled. It must be the chemo. We can't be getting older. I am much younger anyway, so I can't be looking that old yet! They adjusted the level of the antibiotic for the next couple of days, so I have to freeze what we did not use, thinking that we may use it at another time they said. Besides, they can't take it back. I must give it to him every 12 hours, so that puts a bit of planing to accomplish in a timely manner. He rested nicely for the day, ate my fantastic cooking, and rested some more. His son, daughter-in-law and their twins delighted us with a visit. I took them to some of our swings, a zip-line, and slide to play on while Dale rested again. He gets worn out quickly, but always enjoys visits. Enjoyable visit!

This week I began to think that I can do all this. I have been able to find time to get a few things done. Then, I realized I had two extra days off from work (fall recess). Oh well. Good while it lasted. Sure was a couple of nice days to have.

Mellow fall day

Dale's friends at work are keeping in touch with him. Well appreciated. They are trying to find people to donate time for sick bank because he will need more than what he has on his own. If you are able, please do so. I think Dale is worth it!

Yesterday and the night went well enough. Dale hasn't been able to find a comfortable position and moves frequently all day long, not a restless adjustment, but a discomfort adjustment. No chair, couch or bed has given much comfort, so he keeps moving from one to the next. I guess that is okay, gets him up and about-probably the only exercise he can handle now. The day looks to be a mellow fall day. I am glad for that.

Salty foods and caffeine for Jan

Assumption: if I don't add something daily, then: 1) things are just fine, 2) I am so exhausted I can't produce one more thought, 3) we are in emergency stages and there is no time to blog, 4) I am staying busy making sure Dale is okay, 5) I just did not get around to it, yet,  6) I am trying to figure out what has happened and need time to think before I write, or 7) I am on "vacation." This delay, probably a bit of 1, 4, & 5.

Thursday Dale's blood counts were good enough to come home. The day before was an adventure, though. His blood pressure was high, pulse rate high, nausea high, headache pounding, antibiotics dripping, and negative reactions to platelets. They ended up giving him a beta-blocker that worked well and so the night went well and blood counts good enough to come home. Small miracles like that happen all the time. I must administer an antibiotic twice each day through his lines. It is a ball of medication that I hook into his hickman port. Then I have to flush that line again. Not difficult, just important to stay in line with the timing on it.

Today, Dale feels much better, has enjoyed calls and visits, and is resting. I tried to give platelets today, but my blood pressure is too low. Hmmm. Guess I best I eat salty foods, drink caffeine, and get some rest.

Poor Guy, what's next?

Tonight Dale was pretty quiet. He was able to eat a late breakfast and dinner and seemed to enjoy eating it instead of forcing himself to eat because he has to. One glad there. Results of the CT scan last night may have been a sign of an aneurism, but when a neurologist looked at it, said no. That was a scare for awhile today. They also told Dale that his skull was thinning--or in other words--osteolytic. Still need to find more information about that one. The team decided more information was needed so they ordered an MRI for better details. I hope to hear about that one tomorrow.

He has an intestinal infection, therefore, nurses must gown up whenever they treat him so that they do not take his infections to someone else. He may have become infected by someone at the hospital, or by non-hand washing food preparations. My hands happen to be raw from so much hand washing and sanitizer. I will clean them deeper. I bought medical latex gloves to use more consistently. I am worn out, but know there are many who are caring for us and keeping us in their prayers. Thank you. We know this is helping us continue from day to day with each challenge as it comes.

When Dale was given platelets tonight, he had reactions to them, chills, increase in blood pressure, and so nurses assisted him more intensely. They were very efficient and kind. I am glad for their skills and care for Dale. Vitals every 15 minutes are taken along with the platelet transfusion, that is how they monitor his reactions to the transfusion. Once I left, he was much more comfortable.

There were too many people on the roads on the way home, but a beautiful night to see the mountains, city, and autumn colors. The drive is not so bad, really. I have it memorized. The Wasatch Blvd. side of I-215 and Foothill are some of my favorite drives...until the snow flies. So far it has been good, well except for that one time, the first day of chemo, way back in July....

Dale is not a headache but he always has one

The night went relatively well. Headache left-for awhile-then back again. It shouldn't be there so they are checking on possibilities with CT scan and such. I do not know the results yet. White blood count went up slightly and another count is being done now. Constant changes and adjustments are made.

One of the PA's told Dale that the nurses and CNAs really like working with him. I can see why: he always engages in conversations with them and knows their interests. He is positive, brings smiles, and shows appreciation to them. Go Dale!

5th pint of blood

Platelets and 5 pints of blood since yesterday and still not doing well.

They have given Dale 5 pints of blood, platelets, antibiotics, and oxygen. He has a constant headache at level 8 most of the time. Doctor just ordered a CT scan on his head to make sure there is not something else going on there. Dale is feeling fearful and has many reasons to fear what his body cannot do for itself and what the medical treatments may do to him. Although he has received the blood, his counts are still low. A couple of weeks ago, it was similar and then suddenly the counts drastically improved. This is such a strange and unpredictable cancer. They told us in the beginning that his condition could change in either direction and quickly. Experience has shown us, yup it changes and boy oh boy! It is a roller coaster of emotions in all directions with fear, hope, then sadness, anxiety, loss of hope, emptiness, then deep appreciation for friends, love, compassion, forgiveness, understanding, and then boredom. Dale needs visits and calls. He will listen to voicemail if he cannot get to his phone. His emails will be read once he gets home and feels well enough to read them.

Infection dance

Blood cultures came in and say there is an infection. I do not know where or what kind of infection, but that is one reason why Dale feels so lousy. They gave him platelets, and two more pints of blood, so he feels better, but the infection, will keep him there for a while until that is in check. Poor guy. Body just does not function too well. He asked the doctor if there was something he could do to get white blood counts up. The doctor did not miss a beat and told him they have found that a certain dance just might help...he'd get back to us on that one.

I am glad doctors have a sense of humor.

Room 4511

Huntsman again

Dogs & cleaning gloves

Friday was another very crazy day at school, but we made it through without 99.9% of students and teachers knowing what hit our offices today. The guy in the Halloween death costume did not help--scared the secretaries. It is strange that way, unless you are one of us, most people have no clue what goes on in order to keep students safe and learning, parents pleased, and teachers teaching.

I thank those that read the blog and comment occasionally. The blog helps me to process what is happening and gives me a place to keep records.

I volunteered to go to football last night, but was told it was covered and that I wasn't needed. Great! Now I am not needed at work any more or is it that I have trained them all so well in the last couple of years, they can do it on their own? Apparently, they needed me because we lost the game! Plus, I was told I need to spend time with Dale anyway--I work the dance tonight, so all is well...except Dale is not feeling too well. We may be taking a trip to University ER either early in the morning of later tonight. He thinks he can wait until...??? Headache, stomach pains and lots of bathroom breaks. (Thank goodness for cleaning gloves!)

Dale insisted on vacuuming last night, so he did the downstairs, and today the upstairs. I cleaned and completed Saturday chores (Mom will be pleased) and put in a couple hours of study too. Feels good to be able to do "normal" things as though things were normal.

It was such a pleasant fall evening, I decided to go for a walk, well, with my lawn mower. Felt good to be out and being productive, although, I found that dogs have enjoyed my lawn also, left gifts, and killed the grass on the edges. So what do you do? I cleaned out the tomato plants and found a cat's license collar. I heard the owners in their back yard, peaked over the fence, and gave it back to them...what could they say? Thanks?? I don't mind that people have pets, just that they don't keep them (and the gifts) out of our yard. We did, when we had dogs. It is just respect for others. If this entry seems out of sequence, it is. I drafted it, then we ended up in ER, I took picture and added that entry before submitting this one while waiting and waiting in ER.

Early morning in ER

We are becoming familiar with ER staff now. Dale is weak, diarrhea,  stomach pain, and vomited.

I am glad there are newly paved freeways with clean, well seen reflector lines in dark hours. I am glad the ER staff is so nice. I am glad for Sundays as a day of rest--I need it, and will get it eventually. I am glad we got here in early morning hours--it's so much better than late night people in an ER waiting area.

Two pints & what a night!

Blood counts were low. Received two pints. Feels better. This will be a normal process in between chemo treatments, therefore, every 3 days, blood tests will be done to determine where he is and if and when he will need transfusions. I am glad he made it through. I am also glad for the beautiful basket of food left for us today. Kindness continues. Thank you.

The night was not so good. Two laundry loads and minimal sleep for both of us. Dale tried to stay "out-of-my-way" by staying in the other rooms, but somehow, I know and wake up to check on him several times. What a sweetheart he is: Dale tries his best to do what he can to keep my life as unobstructed as possible. To be able to take him to Huntsman for the blood work, he decided he would come to work with me and wait in the car until it was time to go. In the dark of the morning, and before Huntsman center offices were open for patient appointments, we drove to work, bundled Dale in a blanket, and I met with angry parents about their naughty son who denies his aggressiveness in a fight, then proceeded the process for others in this fight. It took me about 1 1/2 hours. Then the center was open and we were able to go. One must know, though, that I offered to come back home to pick him up or bring him into the school in our break room-a quiet corner that no one would even know he was there for an hour or so, but no! Dale needed to be as less as an inconvenience to me and my routines as possible! It worked out and all is well, but my goodness, I really could have come back home to pick him up! We have several more of this type of blood work appointments during my work day, so we will need to find a better way, it is getting cold out there. Perhaps if students don't get into trouble, parents accept that their child does make mistakes, and students actually attend school and engage in learning, before school meetings may decrease.