ER visit Huntsman stay

After good days there are not so good days.

The night turned into IVs, blood work, antibiotics, oxygen, chest x-rays, morphine, and Dale staying and me going home. I was right on the blood work, that it was different at least. Red blood and platelets were good, in fact a healthy high. White blood on the other hand was way way too high. Something must be going on, so even though temperature stabled, and Dale felt better with all the IVs flowing in his system, Huntsman doctor said admit him. Makes sense. Next guess is he will be at Huntsman for the day and come home. Fair enough. He just needs to be stable enough to come home. They took four different cultures and will get results tomorrow. More answers then.

My brother wants me to post on Facebook, so sorry Facebook folks, if you did not want to know more about our intimate cancer life, you'll be getting more of these posts because one actually has to go to blog to read it, whereas Facebook is everywhere and looked at frequently.

5.9 Million and done

They harvested 5.9 million total stem cells in two days. Nice job! They told us some people it takes 5-9 days, not Dale! Just two days for the harvest. Now, though, the pain has definitely set in. His bones have been overworked and are painful. He is tired and in pain, but encouraged. Such a roller coaster of emotions for surviving this whole experience.  He had several spontaneous visitors and loves that, so keep on coming because the time will come when, since people breathe, he will need to tighten the doors of isolation as the immune system vanishes. Wednesday, 2B begins so he has a few days home to recuperate from the harvesting process. In several months after all of the A & B sessions, they will begin his bone marrow transfer and give his own stem cells back.

School was a crazy day, but in its own way, fun. I love my job, the people I work with, the students, and their high school mentality!

Fall ride

Immigration Canyon
After a procedure at Huntsman, we continued the day with a ride through Immigration Canyon and back around Pineview Reservoir. It was a beautiful day and nice to be out and about.

1.5 million harvested stem cells

Yesterday turned out to be a good day which moved into a pain ridden night, but that is good. Dale's blood counts went up especially after they gave him platelets, so the harvest process began. That took from about 10:30 AM to about  4:30 PM. All the lab work is done between 7 AM until they make a determination to continue with the stem cell harvesting. The first is now completed. There will be 3-5 more days of this until they get the number necessary to give back to Dale at a certain time in this treatment regimen. They called last night to tell us they will continue the process again today, so here we go again. Pain set in later in the night, so Dale's night was not easy, but he is doing okay this morning-or he is just telling me much. They also indicated that the urinary infection was really from the bladder as a side-effect from chemo, so they were not too concerned.

I find it amazing that this process is happening. Who, what, how did this get discovered? I do not want to even think about the poor souls who were the test patients in the early years. But Dale is another data point on research and that can't be all that bad as it moves the knowledge forward. I am convinced that the stories of people need to be told and learned from. I held faculty meeting yesterday and told them just a little about Dale's cancer, then sent link to the blog. Why I needed to do so, I am not so sure, but now, it is out there, and I will just plug away and do my best. Perhaps there will be understanding when I don't know what is going on is because I frequently am in a fog.

BMT-Not!

Visit to Huntsman yesterday was non-productive, really. Blood work was not high enough to harvest stem cells so just a lot of waiting around for lab tests and then home with more injections at night to boost blood production. Each morning this week will be the same process, draw blood, wait for labs, stay for BMT process, or go home and stimulate Dale's blood production with injections again. One complication has begun: urinary infection. That will probably stop the whole process. Dale's spirits have diminished and he is showing signs of discouragement. His body is not responding to "schedule" and each set back makes him know it will be a much longer year of treatment than he is ready to deal with.

We greatly appreciate ALL of you out there who visit, call, think, email, or pray for us, and especially those that are able to assist with yard work, cleaning, dinners, transportation, injections, and kindness.

Unknowns with anxiety

Just a bit of anxiety setting in for the unknown of the BMT week. What about the pain? What is the process? Is Dale going to have more than pain? Sick too? Miserable and just downright hurting all over? I will take him tomorrow so we can figure it out. Each time a new process happens, we both anticipate what it will be like, Dale pretty anxious, me perfectly in control. That is why I have been doing as much as nothing in my head as possible so I can deal with it all.

I have received some great hugs and support from friends this weekend. I feel myself fill-up with goodness as we connect. Their energies towards Dale & I are noted and appreciated. Thank you friends.

BMT week begins

Things have been going pretty well. We headed to Huntsman yesterday for an injection-the one after 1A (number of treatment month and formula of that month-so far we have completed 1A, 1B, & 2A)  that Dale was pretty sick. We figured it out though. Last time he took the steroids before the injection without food, this time not until after injection and then with food. Makes a difference so it went well. We both were able to get in a well-deserved mid-day nap which felt good. Today we go to Huntsman again for blood samples to see if he is ready for BMT for the week. They may increase the injections we do at home if he is not ready. But again, the science project continues to be monitored and adjusted along the way. We begin this week with more "firsts"with the BMT parts.

Pre-bone marrow

Two days home and it is okay. Dale gets the injections each day morning and night. Our neighbor, retired dentist, comes each day to do so. He has an inkling to inject the medication in Dale's mouth, but comes around just in time to inject where it should be, stomach. It has been painful and Dale has needed the pain killers. Tomorrow, we go to Huntsman for chemo injection. Attitude is good also. He continues to enjoy visitors and I believe makes them feel good to have been his visitor.

I continue to work on everything I can. This morning, I did not need to Blog to process like I normally do which opened some time to work, just a bit, anyway, on my proposal. Felt good. It is still just whittling but at least whittling is happening. Work has many crazy things going on, but it is good to be there. Dale continues to have calls and visitors while I am at work. That helps.

BMT preparations

Got Dale home yesterday. Appetite good, attitude even, and glad to be home. He came home with a bag full of medications, prescription for pain killers, and a delivery of injections to prepare him for bone marrow transfers (BMT) next week. Two days of home bound nurse care with the injections, weekend visits to Huntsman for infusion one day and the next begins more of the BMT process. That is supposed to be the painful part. Transportation next week is being worked out, but I do not know what kind of condition Dale will be in once procedures begin and the pain sets in. It will be another round of new learning of how to deal with it all.

I am sleep deprived again. It just doesn't happen.

Heavenly Angels

Just as I am falling apart, another heavenly angel(s) come(s) my way and not only understands, but supports, and genuinely cares. Happened many times today. My gratitude is abundant. My faith in the goodness of co-workers, friends, and neighbors is full. I suspect the flowers yesterday came from three great men I work with, I may never know, and that is okay. After my visit with Dale this evening, I felt a need to go to the Corner Bakery for a bit of self-debriefing and healthy dinner. There, I found a friend finishing her dinner, studying for her Women's Bible class. What a delight to see her and feel her love and concern for Dale and I. And I drove safely home from there. Got home and two more heavenly angels (Celestial Cleaners) were finishing up. I am blessed. I am grateful. I am humbled.

Dale was in much better spirits and health today. He said the day was much better than yesterday. They take all the chemo off tonight and he will be discharged tomorrow. Next services will be from the home-bound nursing program for injections for the next couple of days before bone marrow transplant processes.

I had a phone message for platelet donations. They like my blood and platelets. I know the need better now and plan to make some time to do so! Please donate when and where you can. People you love need it.

The calm sets in

Dale said that the night went well. The nurse confirmed that also. I bet it was my visit's calming effect and possibly the visit outside.

D+ Nurse's Aides

Glad I saw Dale today. He was pretty down and out. The day was not fun at all. Seems that the team working with him today received "D+" for grades in school. Shower aqua-cover was inefficient, room in disarray and not sanitized for three days, bed was made incorrectly, headache, and he just felt lousy. He knows the chemo does it to him and had the desire to "pull the plug and come home." What could be worse than what the chemo is doing to him already anyway? He feels like he is "money in their pockets!" The more they treat him, the more money they get out of him. One more day of the 72 hour chemo and then home. There were a bunch of university people on the floor today, coughing, and breathing the air that all the compromised immune system cancer patients get to breathe. Not a good idea.

I was pretty fragile today. Several people came in to check on me. Well, maybe to ask me administrative questions and ended up staying because my countenance must be blaring through my veins. Someone even brought flowers to me. Very nice. I need that. Don't know who, but it is well appreciated. I am running as fast as I can. Someone told me I should just go home. Why? What would I do? Eat potato chips? Fortunately, I don't have any at home...I ate them last week. This week I am working on snow peas, carrots, and celery. 

Mountain View

Reflection of mountain

Reflections

Behind Dale is the hospital reflections on east hillside.

Chemotherapy outside

Got Dale to go outside for fresh air. Chemotherapy machine started beeping so nurse had to come outside. She didn't mind.

Hallucinations

After visiting Dale yesterday, it was good yet not so good. He was more alert, yet still very weak. His voice was better, yet his words not encouraging. After two pints of blood, he seemed better, yet not well. Appetite improved, yet nausea prevails. The 72 hour vicious chemo began (it is on the drip lines but in a dark bag and the fluid in the lines is a pink color--cherry flavor???), yet the diarrhea returns. He told me the night before was very bad with hallucinations and overall upsetting night. This morning, he said not as bad as the night before, but still some hallucinations and almost no resting. Dale says this is getting old. First complaint I have heard from him. He can complain all he wants to. He has all cause to do so.

Voice

Dale felt weak yesterday. They eventually gave him a couple pints of blood. That helps some. I notice when his voice is shallow, his blood levels are low. His day was full of sleep. Appetite also weak. He was not very cognizant. Nausea set in, but by dinner, he was able to eat. This morning, Dale told me that he still did not feel too well feeling like he was suffocating so did not sleep well. That could be part of his sleep apnea issues. Only 8 or 9 more months of this part of the treatment. Then the next 2-4 month phase. Then the next 2-4 month phase. Then be done. Remission.

I have looked for appropriate websites for current information about Mantle Cell Lymphoma. Outdated and unclear information is abundant and I don't trust information on .com sites. Even American Cancer Society only mentions Mantle Cell. So be it. We'll be part of the research.

Dale plus chemo

Not feeling too well. Who would with all that dripping in the veins?

Go Utes

Dale has a way of making people feel comfortable around him. He has always been able to get people to smile, laugh, and break down social barriers. He continues this friendliness in his hospital room with all the staff that come to work with him. Dale does not play the roles of pity me, feel sorry for me. His role continues to emulate I am interested in you, tell me about yourself. Therefore, this week of Red vs Blue, Utes vs Cougars, there has been plenty of bantering with all entering Dale's hospital room. One nurse changed the dressing on his pic line, and took her sharpie out to tag something on the dressing. As she finished, she said: "There! Go Utes!" as though she printed that on the dressing. Nice job, nurse. Dale laughed and told her he probably deserved that! His spirits are doing okay, although there is so much anticipation of the unknown ahead--especially the side effects.

The bone marrow transfer (BMT) doctor came in while I was there so I was able to hear the next step in treatment. Once Dale is released Wednesday, home care nursing takes over and prepares Dale for BMT the next week with various injections and medications. Then, blood samples are taken to find for platelet levels and such for the onset of the BMT and possibly stem cell harvesting. At a later date, six to eight months, Dale's bone marrow and stem cell is then given back to him for recovery time. Personalized medicine, makes sense. That process is several hours at BMT center at the University, but not an overnight stay, so we will have to figure transportation. It will a new stage to experience. Side effects, the doctor said, will mainly be bone pains.

I started to go home and began crying three times, so I detoured and visited Mom & Reed. I had to turn off the auto pilot and think how to get to Mom's by meandering through some Foothill neighborhoods and then Sugarhouse neighborhoods. I am glad I live where I do, actually. It was a well needed nurturing visit.   I needed that. Thanks Mom & Reed.

Science project

Find diagnosis, make prediction, give treatment, take data. Make prediction, take tests & samples, adjust treatment, take data. Adjust prediction, adjust tests & samples taken, take data. Repeat until remission.

Doing okay

This round seems to be going much better than before.

Room 4521

Round 2 Formula "A"
Window View

Pesky Hospital Beds

Dale said he did well with his first chemo yesterday. This is the one that caused him great grief last round with severe chills and then my reaction to his reaction with smashing his car into some lady who was in my way. Made it through! Yippee! Although (there always seems to be some although or however to the status) Dale's hospital bed is over-reacting and adjusting its comfort levels constantly with loud noises and ups and downs inside the mattress. The nurses were so annoyed with it, they asked the engineers to check it. A compressor needs to be replaced, hopefully, today. If the nurses were annoyed with it, imagine Dale's annoyance...

Eight days 2

The second round of the 8-day chemo begins in the morning. We have at least been through this once now. We have a better idea of what it is about so here we go. I will not be driving and getting in another wreck--repeats would not be good. I am pretty adept at keeping the focus on the drive and not where-ever-I-was driving home from the first round of the 8-day chemo. Like flushing the lines daily is no big deal now, just an easy task we do together. See? I am getting better at this caretaking thing.

We have both been lifted again today by co-workers and their awareness, prayers, thoughts, and deeds. Dale even had some friends take time off from working, driving about 50 miles to see him for awhile and then headed back for the other 50 miles. He is missed and appreciated by many. Maybe that is why I consistently refer to him as "My-Dale."  I have to reaffirm who cares the most for him--me.

Good days

It is a good day when there is not too much to report of Mantle Cell Lymphoma. Dale did fine today, although his energy is down some and fear is setting in for the next round of chemo. I don't blame him for the fear. It has been an awful experience so far. Does anyone really like that FLEET experience, anyway?  That is what it has been for two of the past three weeks... daily doses of FLEET affects without drinking that awful stuff. Needless to say, not very fun. Hopefully, with this round of chemo, it will be more gentle on him.

We continue to hear from great friends from various places--Idaho today. It is nice to talk to so many of our  friends we care so much about. Your prayers are felt and appreciated.  

Taking care

Dale feels weaker today and just sicker than yesterday. He feels that his blood counts are going down again. I wonder that also. His blood pressure was low enough not to take his high blood pressure pills. His appetite good and system functioning alright. He has been pretty quiet, which to me means his mind is on things he is not ready to discuss. When he is ready, we will talk about what is on his mind. Grandchildren visited tonight. What a delight! This is what life is about; each generation bringing love to each other.

Sunday, again an uplifting day. People are still pouring out there hearts to us. Some say we give them strength. We say, they give us strength. I taught the lesson in the women's auxiliary meeting today. Many tears were shed as we expressed knowledge of the very thin veil between life and death. Interesting, the topics that just happen to be scheduled when it is my turn to teach. I must need to learn and share what I know. I am running as fast as I can, yet I don't feel it is enough. Dale's physical energies are gone. My emotional energies seem to be fragile yet sustained by so many people in my life. They come to me at the times I need a boost.

September 11, 2011-ten years after 9/11/01. The nation came together, We cannot forget to serve one another and remember what really counts. People count. It is not how much you make or where you live, but how you live and what you do with your time. May God Bless us all with kindness, caring, and forgiveness.

Swings

Grandpa with son and twins. Grandpa's energy boosted for a few minutes. He will sleep well tonight because of precious time spent with them. Thank you.

Weekends

Weekends are good, but too short. It would be nice to have three-day weekends more frequently. We have had visitors today. Love that. It helps both of us. Telling Dale's story is easy to do. Although there are many moments of we-have-no-idea-what-is-going-on, our daily needs are being met and boring is good for if it is boring, that means Dale's condition is handleable. Two weeks ago, it was an ER Saturday night. He was so much sicker than we knew at the time. Good thing we decided to go to the ER.  We have been through the first round of "formula A" and "formula B" and have eight more cycles of that. Dale has felt a bit weaker today and his blood pressure is in normal ranges without the high blood pressure pills, so he did not take it for today. We don't want to lower it any more. A few anxieties are setting in because of the next round of chemo is getting closer each day. If all goes well, they may begin to take his stem cells for future use this next go around.

We did get good news from the insurances: because of the "continuity in continuation of services" the bone marrow transplant will be covered by insurance. Yeah! One stressor taken care of. Otherwise, Dale would pretty much have to start over in the treatment plan with another network of providers. Not a good idea.

I decided to attend our football game last night. Glad I did. It felt good to be out--it was a beautiful night and we won 43-7. I not only love my job, I love the whole staff I work with. They are helping me greatly. I get much support from them. People come to my office just to talk, listen, and tell me how much they care. Many days, it is when I am needing it the most and it boosts me in a way to keep going. I am running as fast as I can, and when I stumble or am about to fall, someone is there holding my hand boosting my energies to continue on. It is all about serving one another. I am looking forward to church again tomorrow. It will be another good Sunday. I get to teach a lesson, topic is "Post Mortal Spirit World." Appropriate for me to learn more about this topic at this stage in the Mantle Cell journey.

Hopeful day

Dale spent the day at Huntsman either having blood work done, talking with doctor, or bone marrow tests. It was a full day for him, much of it waiting and waiting. His patience is so much better these days. I suppose he just figures it wastes energy (that he does not have) to be inpatient with medical things.  He is at their grace, actually. Results are positive. As the chemotherapy progresses, Dale's medical teams adjust what he can handle, and second rounds onward, may be a bit smoother. I say "may" because this is still a guess of how he will react to next round. It will begin in one week. It begins with blood work, baseline for the process, and then chemo, chemo, chemo, for eight days. They do say that his body adjusts to the chemo as the time progresses. Does that mean more? Or what? Overall, I am more hopeful after today's discussions.

Home alone

Dale made it through a day alone. Me at work and Dale and the couch or bed were friends today. He told me he tried to rest, tried to read, tried to be okay, but pretty weak and not so good really. Afraid of what is next, and his body not doing so well. Pain in abdomen, knee still hurting from the fall 2 weeks ago and blood pressure up a bit. I suspect blood count is low again. He goes to Huntsman for lab work and consult with doctor, so that will give a bit more direction. If they keep him there, I do not believe it will be for chemo treatment, rather, to build blood up because it is low again. But that is just me thinking. I know next to nothing about this whole mantle cell lymphoma cancer, just that it is a mess.

Blood pressure

Two weeks ago, low blood pressure was one of the bigger issues. Now it is high blood pressure. With that in mind, we will not really know what to expect and have to deal with Dale's body changes as they come around. I suppose the body is as confused as we are as to what to expect next and it is working as hard as it can to sustain life. Dale is doing alright overall. We have the flushing-his-lines process down. Not that big of deal, but important. Tomorrow,  back to Huntsman for blood work and visit with doctor. It would have been his eight-day chemotherapy but with his other health issues, they said it may be delayed for a week to give his body time to "heal."

The weekend was nice to have time for us. Good talks. Dale eating a few meals, well, food items anyway. I would not call a bowl of cereal, or cooked carrots a meal. He did okay food-wise though. Good step forward.

Gratitude

Weekends are good days. People are able to think of others and visit the sick. That is us. Recipients of such goodness. Kindness surrounds us and we feel the love and concern. The Holy Spirirt must be working overtime in our behalf by bringing us who and what we need as we need it. We are grateful. In listening to Dale tell his story of the last two weeks, I learn how neither of us really knew how seriously ill and fragile his health condition was for several days there at Huntsman. His body was sending what it could to the organs necessary in sustaining life. The rest had to be put aside because of the chemo side affects on his system. Not an easy process. Dale is on the edge of diarrhea control. He has eaten meals today. Rested most of the day and appreciated the visitors. I flushed his lines without incident. Good girl, Jan. I am really glad, though, that I am not a full time nurse. I appreciate all the medical folks and glad they are doing so much, but I rather do what I do, in the assistant principal role I am in. It takes many of us to make a community function well. Tomorrow we plan to have a mellow uneventful day. Hope it is!

Hanging in there with Football Saturday

Dale is just hanging in there, has fears of the unknown physical surprises, however, is eating simple meals today.  He organized his medications in such a way that he knows which hour he is to take which medication. That will be helpful. We had to line up which generic name matched what medication listed-a bit confusing, but we got it organized, now. The home-care nurse flushed and cleaned his lines. She also spoke with us about what to expect and what to look for. Dale's feet are swollen and his blood pressure is high, even though he is back on the medication for it. The nurse called Huntsman, gave the information and was instructed to have Dale watch over it, be calm, and keep feet raised. They are still a bit swollen, but not quite as bad as earlier.

I suppose a day of Football on TV is a good thing, especially if your team wins. That is what Dale is doing today, comfy in his Lazy-Boy Chair, downstairs, watching football. What?? Downstairs? He has been banned from downstairs previously. Well, his balance, energy, and his independence levels are pretty good, especially compared to 7 days ago. We were in the ER at this time last week, waiting, and waiting, and waiting. I find out this morning that once he was admitted to Huntsman, the doctor had a discussion with him about what if they needed to resuscitate him if it got to that point that night. Or in other words, he was on the edge of death. Good thing we let ER and Huntsman take over. That is what we were dealing with all week-weakness, low blood pressure, the diarrhea all while his blood count got lower and lower. Dale has a Living Will and they will just follow his desires from that document.

Me? I took care of domestic chores and concentrated on assisting Dale in whatever he needs to be okay. I am working hard to keep him in the state of mind that he needs enabling him to deal with all these ailments. Friends have called, sent cards, or visited to make sure all is well. Thank you. My studies? In my head still, although I did make a title page for the next section I am writing.

WWII movie night

Dale is home and feeling okay. I got to Huntsman and he was ready to go. Appetite good, system doing well. As soon as we got home, he wanted to eat a chicken sandwich. I figure he can have whatever he wants. We spent some time with the list of medications figuring out what he is supposed to take when. They really have it detailed out. His balance and energy are fairly decent and so we are downstairs watching a WWII movie. Therefore, I am distracting myself and using my laptop instead of really watching. I believe this round of home time will be mellow enough that Dale will get cabin fever, but too bad. Can't do much nor go anywhere. He is doing just fine. It is good to have him here, although the war movie is, well war.

I must again relate kindness at work and home. Kind words, looks, hugs, and a few tears of support keep coming our way. Those energies consistently come around. What can I do, but keep doing the best I can each day? Neighbors called to make sure Dale was well enough to be home and ready to jump in if necessary.  We are blessed to have such good people around us.

Dale keeps mentioning how scared he is now of what his body will do next. It is an unknown world of unexpected, unplanned  body ailments and issues that are ahead. No wonder he is scared. Life with cancer takes on some curious turns and twists each day.

Energies returned

Looks like the food is doing what it should in Dale's body. He ate real food and it digested as it should. His spirits doing well. It has been a long week for him. I believe his home time will be good and he will not need the intensive care so much. We'll see how the doctors feel about that. They will probably tell him that the chemo will have to wait for him to catch up with the schedule of health. One week of delayed chemo makes sense, and I do not think he will be so fragile this go around. I look forward to a bit of normal.

Again, I am amazed at the care I receive from friends. One friend from my doctoral cohort, just had to come by and give me in-person support. His visiting gift means much to me. I do need people. Another at work, gave me a Native American stick that I am to burn with my prayers and let the smoke meet with the heavens. I will wait until Dale comes home to do this. Perhaps it will be part of a Labor Day Activity. The timing of these mercies fascinates me. I must be emitting some energy that says, I-need-you. You,-not-just-anyone,-but-you-right-now. And you come. Thank you thank you thank you. I do not know what else to say, but thank you for finding that energy and bringing it back to me.

No real differences

Still the same. Discomfort, diarrhea, but blood counts okay. He may be progressing a bit. Nurse told me he had a good night and he is improving. They will start new medication to assist with the diarrhea today. Hopefully, it will work and he can come home for a while before he goes back for treatment. We have not heard if the scheduled chemo beginning next week will be delayed or continued. Holding pattern for us, I guess. There is not enough time in a day to do all the not only I want to do, but need and must do. Too bad, though, staying up late just does not work for me. Stuff will just have to wait. I am whittling away at what I can, bit by bit. I suspect, many people have the same problem: no time. I am no different. Another neighbor brought kindness to me last night. I am grateful for the timeliness of such kindnesses that have come our way. Someone higher than us is working with us on this journey.