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.