Dale called mid-day all excited because his blood levels went up, from yesterday's 300 to today at 2800, so he felt better and he would get a bit of jello and broth. He felt good. Notice the past tense there. Once I got to him after work, he had the jello and broth and once again, it became a bout of diarrhea quickly. His system not only has rejected blood for a few days, it rejected the bit of jello. What in jello could bring diarrhea on? He is pretty discouraged with his poor body acting so poorly. Neither of us had a real good nights sleep & rest apparently, because we have been pretty fragile through our days.
Dale told the physicians to work on the bone marrow transplant insurance issue--they gave him a bit of hope with a word of sometimes it could be "waved." We will work on that part. He knows enough to ask questions of caregivers and is receiving some answers. Makes it better for him to understand what is going on.
Today I felt very supported by co-workers: one sheepishly came to my office this morning and told me others may not know what to say, but that he cares. Whoa. That means a lot to me. Another one who I saw during the day who I had asked to burden him with another duty he normally would not accept, as I thanked him, he told me "Only for you, Jan, only for you." Another Whoa. That means a lot to me. Another told me she read this blog and Dale's blog and it was really a love story between us. Whoa. Yet others come by extending warm wishes, hugs, and listening ears, and walking buddies. Whoa, once again. My extended family of friends at work. Thank you. I need you. Thank you.
Tuesday, August 30, 2011
What else?
My visit yesterday was sad. Dale's body is not taking in the red blood like it should. When he was admitted to Huntsman from the University's ER Saturday, they said his count was zero. I nodded and have no idea what that means. The nurse last night explained a bit. The absolute neutrophil count was zero, up to only 200 yesterday (300 this morning) and should be 1500. They have given him at least 4 pints of blood that I know of, platelets, and antibiotics, and then eventually nutrients of some sort in a big white bag (TNC?). He will not be able to eat anything until the colitis and diverticulosis is in check as well as other things I have no knowledge about. Then they will gradually bring liquids for him, then "thicker" liquids and so on until his system can handle food.
She told us there were at least five other patients on the floor that had the same issues and so it is not unusual. I think it is unusual. It is for us. Not in the game plan.
Insurance for the bone marrow transplant called and said our insurance says it is out of network and will not cover it. HUH? Out of network? The U of U and Huntsman not in same network? Really? Insurance is another hassle to deal with on this journey. I will be asking a lot of questions today and figuring out what else to do. Tri-care Prime vs Tri-care Standard is the level of insurances that are conflicting about networks and coverage. How can insurance pick and chose if health care is necessary?
People ask what they can do for us, and my only reply is that I have no idea, and that this is all a mess. I am barely surviving moment to moment. Stress is powerful and overwhelming, yet a mechanism for survival. It is manifesting itself in my total existence.
She told us there were at least five other patients on the floor that had the same issues and so it is not unusual. I think it is unusual. It is for us. Not in the game plan.
Insurance for the bone marrow transplant called and said our insurance says it is out of network and will not cover it. HUH? Out of network? The U of U and Huntsman not in same network? Really? Insurance is another hassle to deal with on this journey. I will be asking a lot of questions today and figuring out what else to do. Tri-care Prime vs Tri-care Standard is the level of insurances that are conflicting about networks and coverage. How can insurance pick and chose if health care is necessary?
People ask what they can do for us, and my only reply is that I have no idea, and that this is all a mess. I am barely surviving moment to moment. Stress is powerful and overwhelming, yet a mechanism for survival. It is manifesting itself in my total existence.
Monday, August 29, 2011
New room view
Next room view. Was hoping for season changes before next room change but not so. Blood transfusion abounds this visit.
Sunday, August 28, 2011
Watching Dale slowly die
Huntsman Cancer Center gave him blood and oxygen through the night. His voice is better, he is more stable. Duh! They take blood out for test after test, his bone marrow is compromised because of the chemo and they expect him to keep developing blood enough to build up for next chemo. Seems it should be standard procedure to add a pint of blood on the way out, "needed" or not. Maybe no one else in their data collection has had so much going on, but I suspect, we should have been advised better on expected recoup issues.
I made it home by 11:00 PM, should have called Mom, but did not-I barely made it in myself. It took everything I had to drive safely home. I kept praying that people would stay out of my way as I drove. They did and I also remembered where I live. Auto pilot.
Watching Dale slowly die is a lousy experience. I don't care what people say. It is lousy. He may recover in a year or more, he may not. He may get a few more months of life granted because of the cancer treatment. He may not. Amazing science does not know nor tell the whole story. There is so much more to cancer treatment than the hospital and medical sides.
This week Dale had constant watch from great neighbors giving their time to him. I can't thank them enough. This is going to be a long long process. I don't see them continuing with so much assistance for all of that time. If this is wearing on me, it must be wearing on them. However, they may have more heart, compassion, and time than me. I am thinking how to reconfigure rooms and furniture to make Dale more comfortable and able to be alone a little between hospital stays or at least feel like it is his space.
I made it home by 11:00 PM, should have called Mom, but did not-I barely made it in myself. It took everything I had to drive safely home. I kept praying that people would stay out of my way as I drove. They did and I also remembered where I live. Auto pilot.
Watching Dale slowly die is a lousy experience. I don't care what people say. It is lousy. He may recover in a year or more, he may not. He may get a few more months of life granted because of the cancer treatment. He may not. Amazing science does not know nor tell the whole story. There is so much more to cancer treatment than the hospital and medical sides.
This week Dale had constant watch from great neighbors giving their time to him. I can't thank them enough. This is going to be a long long process. I don't see them continuing with so much assistance for all of that time. If this is wearing on me, it must be wearing on them. However, they may have more heart, compassion, and time than me. I am thinking how to reconfigure rooms and furniture to make Dale more comfortable and able to be alone a little between hospital stays or at least feel like it is his space.
Saturday, August 27, 2011
Temperature up
What do I write about now? ER rooms are long, uncomfortable visits. Temperature was up, zero energy, and infusion port had open blisters so here we are. I need a nap. We had already been to VA Hospital for some hearing loss tests (unrelated to mantle cell) early this morning so this is second trip. What happens if I get sick? I have a headache myself, but I don't count though. I am on call all the time. I suppose any caretaker is.
The last two days, Dale's blood pressure has been okay, weaker each day, and only small bouts of diarheea. I learned how to flush out the port but the dressings look infected to me. Maybe that is where temperature comes from. White blood count is down enough she said to be concerned. Dr. Is talking with hematology for further instructions. I may be going home alone. Sleep sleep sleep is what I need. He sleeps. I wait.
Huntsman stay it is. Now we wait for that to happen.
The last two days, Dale's blood pressure has been okay, weaker each day, and only small bouts of diarheea. I learned how to flush out the port but the dressings look infected to me. Maybe that is where temperature comes from. White blood count is down enough she said to be concerned. Dr. Is talking with hematology for further instructions. I may be going home alone. Sleep sleep sleep is what I need. He sleeps. I wait.
Huntsman stay it is. Now we wait for that to happen.
Friday, August 26, 2011
Weaker by the day
Dale has a great attitude. He is doing the best he can, smiles and is appreciative of every bit of assistance that comes our way. Humility is strong. Blood pressure is improving slightly, less laundry, and appetite better. Dale is a good man in a cancerous research project. He is taking it well. I love My Dale.
Wednesday, August 24, 2011
Glowing
Today was better-but that can be deceiving. Only 3 laundry loads during the night. Dale was up a lot all night, which means I was too. I went to work early, after he took his medications for the day. He was supposed to be asleep for two hours until Dave would get there. Dale got hungry--good sign. It took him a full hour to shuffle himself to the kitchen for a bowl of Rice Chex. Once Dave got there and observed Dale's behavior and report of the morning, he went back to his home and came back with a blood pressure cuff. 86 over 53. No wonder he fainted yesterday. No wonder he had no energy to move. So, I spoke with the nurse at Huntsman, which eventually got a nurse to the house to take vitals, flush the tri-fusion, drew blood and reported results to Huntsman.
The results are: no more high-blood medication, no more of one of the nausea pills, and tomorrow the nurse comes back for IV-two hour drip of saline. And, his tri-fusion lines need to be flushed out daily. The first nurse was not clear on that. Fair enough. So tonight, home care delivered equipment for the procedures. What a great service.
It all DEPENDS on how you look at it but, Dale asked for some help, so I called the pharmacy for an accurate blood pressure cuff and picked up supplies. Perhaps, less laundry.
One of the neighbors suggested getting a camera or two for security and for my peace of mind when I am not home with Dale. May need to look into that.
Last night, I did a take-care-of-Jan idea. The Celestial Cleaners were with us and as we were talking they asked if there was anything else they could do for me. I have found a need of a "girl's night out" and suggested a movie night. It was well received and we will go Friday night. Sitter already arranged for Dale while we are out. Nice. Great people around us.
Dale told me today how beautiful I have become. I know his vision must be tainted by those eyedrops, because I am exhausted. He says I glow and loves to see me interact with others. He thinks I have finally learned compassion. If that is true, perhaps the cancer thing can go away and we can go on to next adventures together.
The results are: no more high-blood medication, no more of one of the nausea pills, and tomorrow the nurse comes back for IV-two hour drip of saline. And, his tri-fusion lines need to be flushed out daily. The first nurse was not clear on that. Fair enough. So tonight, home care delivered equipment for the procedures. What a great service.
It all DEPENDS on how you look at it but, Dale asked for some help, so I called the pharmacy for an accurate blood pressure cuff and picked up supplies. Perhaps, less laundry.
One of the neighbors suggested getting a camera or two for security and for my peace of mind when I am not home with Dale. May need to look into that.
Last night, I did a take-care-of-Jan idea. The Celestial Cleaners were with us and as we were talking they asked if there was anything else they could do for me. I have found a need of a "girl's night out" and suggested a movie night. It was well received and we will go Friday night. Sitter already arranged for Dale while we are out. Nice. Great people around us.
Dale told me today how beautiful I have become. I know his vision must be tainted by those eyedrops, because I am exhausted. He says I glow and loves to see me interact with others. He thinks I have finally learned compassion. If that is true, perhaps the cancer thing can go away and we can go on to next adventures together.
Tuesday, August 23, 2011
Falling and computer woes
Dale had a medium night, but there were three laundry loads done. And we thought 6 pairs of pajamas would be sufficient for a week before weekly laundry! Dale needs 6 each day so far. He was able to eat a small bowl of cereal and seemed okay. Dave was coming over at 8:00 anyway to help determine if Dale need more sitters through the day.
I called about 10 or so to find out how he was doing. Dale's first statement to me in a raspy and sore sounding voice was: "oh, the paramedics just left, but I am okay." Were they on the list of sitters for the day?? No! Apparently, Dale fell and then passed out.
Dale is stubborn. He went downstairs to work on the computer. He decided that did not work too well so headed back up the stairs. Dave was just coming in and heard a thud and a "help!" Dale's head was on the stair landing and he was very incoherent. Dave called emergency and by the time they arrived (the station is 3 blocks east of us) Dale had showered and cleaned himself up.
My task tonight was to bring his computer upstairs and put in my office-a great room with a view of the mountains. I will miss it. Then move my laptop downstairs. I prefer laptop moving rather than desktops with wires, cords, big components (PCs have tons of stuff) whereas my MAC laptop is great! Even my desktop at work (MAC) would have been very slick to move.
I called about 10 or so to find out how he was doing. Dale's first statement to me in a raspy and sore sounding voice was: "oh, the paramedics just left, but I am okay." Were they on the list of sitters for the day?? No! Apparently, Dale fell and then passed out.
Dale is stubborn. He went downstairs to work on the computer. He decided that did not work too well so headed back up the stairs. Dave was just coming in and heard a thud and a "help!" Dale's head was on the stair landing and he was very incoherent. Dave called emergency and by the time they arrived (the station is 3 blocks east of us) Dale had showered and cleaned himself up.
My task tonight was to bring his computer upstairs and put in my office-a great room with a view of the mountains. I will miss it. Then move my laptop downstairs. I prefer laptop moving rather than desktops with wires, cords, big components (PCs have tons of stuff) whereas my MAC laptop is great! Even my desktop at work (MAC) would have been very slick to move.
Monday, August 22, 2011
Wash and Dry
I am so glad for modern conveniences like washers and dryers. Bedsheets and four pajama bottoms later, Dale is snoozing comfortably on the couch after a long day of dismissal of bowel fluids all day. Clorox is my friend. Side-affects after chemotherapy is not my friend. To be safe, neighbors sat with Dale most of the day, giving him support as needed. They will do so tomorrow also, just to make sure he is okay. Thank you Thank you. Dale's temperature has been a bit high but not in the danger zone they gave us. He hydrates pretty well, but appetite is missing as the nausea takes over. He has eaten very little today, although blood sugar is okay.
The men taking care of Dale today, also provided him with a shower chain (can't think what it is called--shower head with adjustable piping to easily move it around) shower chair, and walker for the days he needs them. This I suspect comes from experiences of care-taking and knowing what will come next. Oh my goodness. And I think I am going to be able to do it all (work, dissertation, care-taker)! I will probably just not be very good at anything.
May God bless us.
The men taking care of Dale today, also provided him with a shower chain (can't think what it is called--shower head with adjustable piping to easily move it around) shower chair, and walker for the days he needs them. This I suspect comes from experiences of care-taking and knowing what will come next. Oh my goodness. And I think I am going to be able to do it all (work, dissertation, care-taker)! I will probably just not be very good at anything.
May God bless us.
Sunday, August 21, 2011
Central Line again
Another central line cleaning and dressing. Dale was told not to breath, therefore, looked away.
Red box
Home from the four day chemo a bit earlier than we thought. But that is good. Dale is very tired, has been a bit "loopy" he calls it, but okay and glad to be home. His visitors at Huntsman found he was not there and then found our home to visit here. It is tiring, but good to Dale's spirit. He needs people around him and he always feels better from the visits.
Today begins the next stage for us also: home care. His tri-fusion line or the central line needs cleaning and flushing daily. I suppose my education of nursing skills are about to begin. A nurse is coming by to instruct me and show me what to do with all the supplies delivered a couple of hours ago. I am actually glad to be an educator, instead of a nurse, but this is my sweetheart, and its supposed to be different. I will do my best.
Note the big red container that was delivered today for all the stuff I will need to use!
There are cleaning supplies for the central line, needles for cleaning it, swabs to clean, and instructions for keeping it all in place WITHOUT infections. He needs the one shot in the morning and then all the various medications to keep him going well. I am a bit anxious about leaving him home alone for extended times. I will have to see how he is in the morning and how the night goes.
Today begins the next stage for us also: home care. His tri-fusion line or the central line needs cleaning and flushing daily. I suppose my education of nursing skills are about to begin. A nurse is coming by to instruct me and show me what to do with all the supplies delivered a couple of hours ago. I am actually glad to be an educator, instead of a nurse, but this is my sweetheart, and its supposed to be different. I will do my best.
Note the big red container that was delivered today for all the stuff I will need to use!
There are cleaning supplies for the central line, needles for cleaning it, swabs to clean, and instructions for keeping it all in place WITHOUT infections. He needs the one shot in the morning and then all the various medications to keep him going well. I am a bit anxious about leaving him home alone for extended times. I will have to see how he is in the morning and how the night goes.
Saturday, August 20, 2011
Nature is best
Our visit today was pleasant, just the two of us (and hospital staff, of course). I took pictures for the history pieces. Dale looked better today than yesterday, but grayer and without energy. His sense of humor is tired, although he is working hard to be social and pleasant. We did have a good laugh together, can't remember what about but we both felt the joy of a good laugh.
Dale's room is on the east this time. We will be seeing the changing of the seasons from this side of the hospital. He says he likes the quiet and peace of nature on the hillside. I tend to agree.
He looks worn out to me, here.
The hospital is quiet of people on weekends, however, those that are there, remain professional and pleasant.
Dale's room is on the east this time. We will be seeing the changing of the seasons from this side of the hospital. He says he likes the quiet and peace of nature on the hillside. I tend to agree.
He looks worn out to me, here.
The hospital is quiet of people on weekends, however, those that are there, remain professional and pleasant.
Rose Gift
Yesterday Dale did well with treatment. How do they figure out what to treat him with anyway? This round also adds in eye drops several times a day to prevent blindness. Great! Another issue for him to deal with. Chemo may kill cancer cells, but it looks like its side-affects are pretty vicious also. His spirits are solid, attitude tiring although boosted greatly by friends, family, and visitors at any time.
This is the rose bush that the Heavenly Angels planted for us the other night. It looks grand and we will always remember its presentation of love.
Work seemed to have extra stressors around, although I turned one situation around that may have been an additional stressor. Youth-in-Custody student had "attitude" which I skillfully turned into excitement to join our student body. Yahoo! There is so much to do to get a high school to run effectively, I am not sure if one can understand unless they have been there themselves in the whole process. Staff, teachers, students, counselors, coaches, advisors, PTSA, volunteers, and administrators-or in other words-everyone that walks in the doors-put in so much time, thought, efforts, training, adjusting, heart, and soul to keep it running well for America's children. I am amazed at all that goes into each day to educate America's youth. It is good to have a weekend before students arrive for the school year. We are exhausted, yet will be ready Monday morning to greet students for a new year.
After I left Dale last night, I noted smoke in the sky at Parley's and I215. As I approached, fire fighters, police, and other emergency vehicles were approaching. Semi-Truck accident caused the brush fire. Once I got back to the high school, I called Dale to make sure he knew I was safe since--well--I have history (recent history) of car wrecks coming home from hospital. I went back to the school for a wedding reception of the school's IT Travis. I wanted to give him support for all the support he gives us. It was lovely. I am glad I was able to attend. We also won our football game (I followed it on Twitter), so it was a good evening.
This is the rose bush that the Heavenly Angels planted for us the other night. It looks grand and we will always remember its presentation of love.
Work seemed to have extra stressors around, although I turned one situation around that may have been an additional stressor. Youth-in-Custody student had "attitude" which I skillfully turned into excitement to join our student body. Yahoo! There is so much to do to get a high school to run effectively, I am not sure if one can understand unless they have been there themselves in the whole process. Staff, teachers, students, counselors, coaches, advisors, PTSA, volunteers, and administrators-or in other words-everyone that walks in the doors-put in so much time, thought, efforts, training, adjusting, heart, and soul to keep it running well for America's children. I am amazed at all that goes into each day to educate America's youth. It is good to have a weekend before students arrive for the school year. We are exhausted, yet will be ready Monday morning to greet students for a new year.
After I left Dale last night, I noted smoke in the sky at Parley's and I215. As I approached, fire fighters, police, and other emergency vehicles were approaching. Semi-Truck accident caused the brush fire. Once I got back to the high school, I called Dale to make sure he knew I was safe since--well--I have history (recent history) of car wrecks coming home from hospital. I went back to the school for a wedding reception of the school's IT Travis. I wanted to give him support for all the support he gives us. It was lovely. I am glad I was able to attend. We also won our football game (I followed it on Twitter), so it was a good evening.
Thursday, August 18, 2011
Rest and be rested
I took care of me a bit and I feel rested and better to cope. That tells me I need to get good rest consistently (duh!). Dale is pretty chipper while in the hospital this time. Visitors and staff take care pretty well. He is confident they are addressing the extra care for the kidneys on this round of chemo. Day two is much better on him than the treatments before. Good. That's all.
Wednesday, August 17, 2011
Next round
Today begins the new phase of the chemo mixes. Dale was delivered to Huntsman for blood work first to determine if he was able to begin this next mixtures of chemo. Yes he is, so they put in a line of some sort, not a pick line or a port, but something else for the chemo. The first mix is the same that caused his violent chills and reactions, so it won't be a fun night. Diarrhea is taking over his system and this round will not help. It also is not too friendly with the kidneys, so they will watch that carefully. I am glad he is in good care of the hospital and not home. I am not so good of a nurse.
Dale is spreading love and caring still as he continues to weaken with the treatment and its side-affects. I recall when I decided to marry him, that if so many people and friends felt such joy to have Dale as a friend, he couldn't be all that bad. That legacy continues. Everywhere he is, people enjoy his friendship. I am lucky to have him as mine.
Dale has had numerous visitors. A whole group took annual leave from work to visit. When I got home, visitors kept coming one after another. Unfortunately for me, I was very, very tired--exhausted actually. And I still needed to be social and gracious. I had a hard time keeping awake; I had to move around, get up to get something, or something to keep awake. I realized that I am missing my "Jan" time. I need time for myself more than I thought. The thing is, Dale really needs not only "Jan" time but lots of people time too. How do I balance all that? I am so tired.
Dale is spreading love and caring still as he continues to weaken with the treatment and its side-affects. I recall when I decided to marry him, that if so many people and friends felt such joy to have Dale as a friend, he couldn't be all that bad. That legacy continues. Everywhere he is, people enjoy his friendship. I am lucky to have him as mine.
Dale has had numerous visitors. A whole group took annual leave from work to visit. When I got home, visitors kept coming one after another. Unfortunately for me, I was very, very tired--exhausted actually. And I still needed to be social and gracious. I had a hard time keeping awake; I had to move around, get up to get something, or something to keep awake. I realized that I am missing my "Jan" time. I need time for myself more than I thought. The thing is, Dale really needs not only "Jan" time but lots of people time too. How do I balance all that? I am so tired.
Tuesday, August 16, 2011
Amazing Grace
One never knows the impact made on another until the circle comes back around. Many young people came to our home and descended upon the overgrown bushes, weeds, and groomed the yard. Neighbors drove by in awe! So many of the youth, we did not even know, yet, gave us their time and our love for each has grown tremendously. Their giving hearts and hands were felt by us with the grace given to us. It was amazing. Several came to me offering more service as time progresses and our needs increase and change. There are two more people blessed with JOY because of the evenings activities. America is in good hands with the 20-somethings (and a few 30-somethings sneaking in to help out) and their ambitions, golden hearts, and seeing beyond themselves. Two church hymns came to mind: "As I have been given much, I too must give" and "As I have loved you, love one another." This evening will never be forgotten.
Sunday, August 14, 2011
It's not about me
I sat in church today with many faithful people, each with their stories to tell. I am, at this time receiving much attention, prayers, concerns, and questions. What about them? I hear bits and pieces of someone's dilemma and know they have needs also. Who is to say one is greater than the other? That is amazing to me the compassion and care friends, neighbors, family, and acquaintances have for one another.
It is good to be a part of so many caring people, each doing their part to lighten burdens of others. Many I have only known for a very short time yet they are very willing to serve us. I sat by one gal whose needs are as great as mine, yet she made sure I felt her concerns for Dale and me. Her time in asking me about my needs fascinated me because I really don't know much about her, although I did learn her name today. This got me to thinking. Do we need each other, to serve, to care for, to understand, to have compassion for another in order to be happy? Doesn't it just feel good to help someone in need? Losing yourself in the service to others makes so much sense. It feels good to give, and now that Dale and I are recipients of such service we feel the goodness of genuine voluntary service. Our joy is great as I venture to state, as is the joy of those serving.
It isn't about me and our huge need of support, service, time, understanding, and hope. There is a greater plan in this journey. One that I am learning to appreciate more and more as the journey continues. I may end up alone much earlier than I thought and I am finding I do not need to be alone. I can always serve others and will know happiness in doing so. My little family of Me, Myself, and I will need to become We, Ourselves, and Us (which, by the way will extend beyond My Dale and I). A hard lesson to learn for someone who has been able to do it on my own most of my life. I am working on it!
It is good to be a part of so many caring people, each doing their part to lighten burdens of others. Many I have only known for a very short time yet they are very willing to serve us. I sat by one gal whose needs are as great as mine, yet she made sure I felt her concerns for Dale and me. Her time in asking me about my needs fascinated me because I really don't know much about her, although I did learn her name today. This got me to thinking. Do we need each other, to serve, to care for, to understand, to have compassion for another in order to be happy? Doesn't it just feel good to help someone in need? Losing yourself in the service to others makes so much sense. It feels good to give, and now that Dale and I are recipients of such service we feel the goodness of genuine voluntary service. Our joy is great as I venture to state, as is the joy of those serving.
It isn't about me and our huge need of support, service, time, understanding, and hope. There is a greater plan in this journey. One that I am learning to appreciate more and more as the journey continues. I may end up alone much earlier than I thought and I am finding I do not need to be alone. I can always serve others and will know happiness in doing so. My little family of Me, Myself, and I will need to become We, Ourselves, and Us (which, by the way will extend beyond My Dale and I). A hard lesson to learn for someone who has been able to do it on my own most of my life. I am working on it!
Friday, August 12, 2011
Smile on the outside
Feels resolved that this is lousy, but what do you do? Dale is working well to be as optimistic as he can...considering. This is a miserable way to feel.
Thursday, August 11, 2011
Downhill
After our visit with the mantle cell doctor, Dale found he should be taking his regular medications. Oops. He was so concerned that he had to follow the calendar from the chemo, that he did not think to take them. So he began those pills today. That would explain some of his symptoms lately.
He slept well last night for the first time in weeks. He was groggy when I got up, balance was off, mind trying to make decisions. He thought we should fill the gas can for the lawn mower before I left. He was very insistent that should be done. I was able to convince him we could do it when I got home. However, plans do not always go as planned.
I received a panic phone call while at work. Dale lost an excessive amount of bowel fluids within moments. Off to ER we go. Friends at work rallied around to help with transportation since I tend to be a bit emotionally attached to My Dale.
Will post more as I learn more. Actually, the other ER patients make an interesting and infectious watch.
He doesn't look sick on the outside, but you should see the insides!
9:30 PM CT scan finally completed, and questionable. They may move him to the Huntsman Cancer Hospital for a few days. Still waiting to hear. I am home, another friend took over the watch with him. Appreciated.
9:40 PM Keeping him there. Lesion on a liver, but they don't know what that is about. Huntsman will take over.
He slept well last night for the first time in weeks. He was groggy when I got up, balance was off, mind trying to make decisions. He thought we should fill the gas can for the lawn mower before I left. He was very insistent that should be done. I was able to convince him we could do it when I got home. However, plans do not always go as planned.
I received a panic phone call while at work. Dale lost an excessive amount of bowel fluids within moments. Off to ER we go. Friends at work rallied around to help with transportation since I tend to be a bit emotionally attached to My Dale.
Will post more as I learn more. Actually, the other ER patients make an interesting and infectious watch.
He doesn't look sick on the outside, but you should see the insides!
9:30 PM CT scan finally completed, and questionable. They may move him to the Huntsman Cancer Hospital for a few days. Still waiting to hear. I am home, another friend took over the watch with him. Appreciated.
9:40 PM Keeping him there. Lesion on a liver, but they don't know what that is about. Huntsman will take over.
Wednesday, August 10, 2011
Surprise, surprise
I was surprised by Dale visiting us at work. My team is a great team of men, with several secretaries supporting us. It was good that he was able to do so and tell them himself how he feels and what is going on. Thanks, guys, for listening with compassion.
But then, once I got home, Dale had taken a turn for the worse and we headed to ER. He had back pains that he thought were from kidney stones. Several hours later, with morphine, blood & urine samples, and ultra sounds, they sent us home. Only thing was possible elevation of enzymes in liver. Don't know what that means, could be an effect of current medications. We will let the doctor know today as we meet with her for blood samples and consult of conditions.
It was interesting to be at University as a research and teaching place. ER doctor instructed and explained processes more in detail to the resident as Dale was taken care of. Interesting. They were both very professional and personable.
But then, once I got home, Dale had taken a turn for the worse and we headed to ER. He had back pains that he thought were from kidney stones. Several hours later, with morphine, blood & urine samples, and ultra sounds, they sent us home. Only thing was possible elevation of enzymes in liver. Don't know what that means, could be an effect of current medications. We will let the doctor know today as we meet with her for blood samples and consult of conditions.
It was interesting to be at University as a research and teaching place. ER doctor instructed and explained processes more in detail to the resident as Dale was taken care of. Interesting. They were both very professional and personable.
Tuesday, August 9, 2011
Sign of the Times
I have begun to notice that Dale's skin tone, eyes, and voice are changing. He normally has a consistent healthy looking skin tone even when sick, but it is becoming less vibrant. His eyes have dark circles and are dull. His voice is rattled and gravelly. Energy level decreasing rapidly. Sense of humor still in place, his mind fine, although sense of urgency on some things continues. Dale does not like to sit still very long, but finds himself unable to focus for any amount of time. He says he rests at night, but does not sleep and wonders around the house, to the couch, to beds downstairs, not able to find comfort or sleep. He has projects in his mind developing which keep his excitement going. I am glad for that.
I believe it is really a downhill road from here on out.
I believe it is really a downhill road from here on out.
Monday, August 8, 2011
Sundays
Sundays are good days. We both feel uplifted with love, faith, and hope. Many people's spirits, friendships, and goodness, came our way. Both Dale and I feel the prayers and energies of love from many around us. It helps a lot.
Today I begin the new school year, although last week was the first week--I was out of town most of it, so figuring our routines for the year will be in order. My studies have been on hold since end of the semester class and the rest is dissertation processes so it is really on my timeline. I do not want to delay it too long, just slow down a bit maybe. I am thinking that my "super focus" times will assist me in keeping my heart and mind in balance. Time is valuable to both Dale and I and our times together need to be priority.
On we go.
Today I begin the new school year, although last week was the first week--I was out of town most of it, so figuring our routines for the year will be in order. My studies have been on hold since end of the semester class and the rest is dissertation processes so it is really on my timeline. I do not want to delay it too long, just slow down a bit maybe. I am thinking that my "super focus" times will assist me in keeping my heart and mind in balance. Time is valuable to both Dale and I and our times together need to be priority.
On we go.
Saturday, August 6, 2011
Ten minutes to 3 hours
We went to Dale's first vincristine infusion today. Now we know what and where it is, but this morning was not good. He felt great pains in his abdomen all the way to Huntsman. Criticized my driving and became a passenger seat driver. I obeyed, he should have as much comfort as I can give, which as the day continued, I did not do so well. Parking garage was pretty bare, so that was okay. He really did not know where the appointment would be other than south of Huntsman center, he thought. Nope. I left him sitting with some nice security men in the wellness center and hunted down where we were to go. It was actually in clinic areas we had been before, just around the corner, which is south of clinics he knew of.
He felt so lousy, it put the nurse on alert, who contacted whomever, and verified his treatment for the day and added three more hours to the process. Would have been 10 minutes of chemo, but with the added treatments for his condition, longer and more stuff. When she injected him with the 10 minute formula, she had to put on contamination gown and gloves and protected Dale's skin around the injection: it eats skin. My oh my! Kills skin, so what does it do inside? Hopefully, JUST kills cancer.
Nurse's magic worked well, so his energy increased. He had some errands to do with me in tow. He felt well enough to drive. Good. I would rather drive alone any way. I did not say much, but what I said did not do well. So then I cried. Hate that! We settled the issues and continued the day with pedicures for us both. Red toes for me. I took a picture to add color to the post, but I thought it a bit odd, so I did not. Nice to relax and be taken care of for a few minutes, though.
All that goes on in my head happens at night, I guess, because I do not wake up refreshed. Hope I can make it through each day of work without becoming ornery and then so exhausted at home, I become even more ornery.
He felt so lousy, it put the nurse on alert, who contacted whomever, and verified his treatment for the day and added three more hours to the process. Would have been 10 minutes of chemo, but with the added treatments for his condition, longer and more stuff. When she injected him with the 10 minute formula, she had to put on contamination gown and gloves and protected Dale's skin around the injection: it eats skin. My oh my! Kills skin, so what does it do inside? Hopefully, JUST kills cancer.
Nurse's magic worked well, so his energy increased. He had some errands to do with me in tow. He felt well enough to drive. Good. I would rather drive alone any way. I did not say much, but what I said did not do well. So then I cried. Hate that! We settled the issues and continued the day with pedicures for us both. Red toes for me. I took a picture to add color to the post, but I thought it a bit odd, so I did not. Nice to relax and be taken care of for a few minutes, though.
All that goes on in my head happens at night, I guess, because I do not wake up refreshed. Hope I can make it through each day of work without becoming ornery and then so exhausted at home, I become even more ornery.
Friday, August 5, 2011
Two Days Home
I got home from San Diego late on Wednesday. Dale got home several hours before that and was very pleased to see me arrive safely home. He had so many experiences to tell me about that I was up even later. I am not good without sleep, although it was fun, yes, actually fun, to hear Dale's excitement of his learnings, ponderings, and feelings. He is working hard to keep a spiritual focus.
Dale has minimal energy but yet needs to be as productive as possible. He is able to think match clearer than while on chemo. That stuff plays havoc on a body. I see dark circles around his eyes, which is not normal for him. Perhaps this is one of those signs I will need to look for during this whole experience.
He should be home for 14 days before the next round of chemo. Some lab work tomorrow and Wednesday will tell doctors what is going on and if treatment need adjustments for longer at home or shorter times between therapies.
A friend mowed the lawn last night. He asked if I wanted it bagged and how short to cut it. Thinking that a bit shorter would make up for the twice a week mowing that Dale normally did, would make it last longer between mowings. Unfortunately, 10 bags and three hours later, it was done. It normally takes about 30 minutes. So now what do I do with all that bagged grass? He was smiling each time I came around in amazement of what I had requested of him--after all, he told me, it was his idea to bag and more shorter! Before this whole deal is over, i may lose friends. I had better be careful about what I ask for.
Doctors decided the pick line should not stay in until the next chemo--to much of a risk for infection. That is our main concern from now on. I have sanitizer everywhere for me, him, and anyone that comes around. Guess I best carry it with me also. They have also told us that if his temperature got to 101, I would have to get Dale immediately to U of U Emergency Room. No other place, because it would take any other place too long to get to their protocol for mantle cell lymphoma. No pressures.
Dale's first day home brought visitors from neighbors. He enjoyed it. As I come back into my work scene, people ask how my summer was. Sometimes I need to tell them the answer. But I also think I had better warn them...are you sure you want to know? Sit down. Secretaries are all very supportive, my boss tells me I have a very long rope to work with to get through it. I work with a huge family of friends. I will need them. I already feel their love and concerns.
Dale and I thank everyone.
Dale has minimal energy but yet needs to be as productive as possible. He is able to think match clearer than while on chemo. That stuff plays havoc on a body. I see dark circles around his eyes, which is not normal for him. Perhaps this is one of those signs I will need to look for during this whole experience.
He should be home for 14 days before the next round of chemo. Some lab work tomorrow and Wednesday will tell doctors what is going on and if treatment need adjustments for longer at home or shorter times between therapies.
A friend mowed the lawn last night. He asked if I wanted it bagged and how short to cut it. Thinking that a bit shorter would make up for the twice a week mowing that Dale normally did, would make it last longer between mowings. Unfortunately, 10 bags and three hours later, it was done. It normally takes about 30 minutes. So now what do I do with all that bagged grass? He was smiling each time I came around in amazement of what I had requested of him--after all, he told me, it was his idea to bag and more shorter! Before this whole deal is over, i may lose friends. I had better be careful about what I ask for.
Doctors decided the pick line should not stay in until the next chemo--to much of a risk for infection. That is our main concern from now on. I have sanitizer everywhere for me, him, and anyone that comes around. Guess I best carry it with me also. They have also told us that if his temperature got to 101, I would have to get Dale immediately to U of U Emergency Room. No other place, because it would take any other place too long to get to their protocol for mantle cell lymphoma. No pressures.
Dale's first day home brought visitors from neighbors. He enjoyed it. As I come back into my work scene, people ask how my summer was. Sometimes I need to tell them the answer. But I also think I had better warn them...are you sure you want to know? Sit down. Secretaries are all very supportive, my boss tells me I have a very long rope to work with to get through it. I work with a huge family of friends. I will need them. I already feel their love and concerns.
Dale and I thank everyone.
Wednesday, August 3, 2011
Coming home
Dale gets to come home today. He has been a good sport through this round of chemotherapy although one of the last ones had the affect of drinking Fleet all day. Better at hospital than at home.
I come home from San Diego tonight. My head finally emerged out of fog mid-day Tuesday. I am up to a day at a time versus a moment at a time.It has helped being with a great group of teachers for and administrators.
Dale tells me many friends have visited him. Thank you friends. It means alot to both of us.
I come home from San Diego tonight. My head finally emerged out of fog mid-day Tuesday. I am up to a day at a time versus a moment at a time.It has helped being with a great group of teachers for and administrators.
Dale tells me many friends have visited him. Thank you friends. It means alot to both of us.
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