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