Another day down

Today was a mellow day for both of us. No incidents. Nothing exciting to report. Dale battles with a slow heal, but works hard to maintain his great attitude. He is a little bothered that his bald head is still bald. Peach fuzz is still fuzz. A friend reminded him that newborn babies sleep most of the time and Dale needs that much to allow his body to heal and build its immunity. We will probably begin celebrating two birthdays each year, adding bone marrow transplant day for the second one. Dale's appetite is improving and his system is beginning to function normally, he just continues to be very weak. Emotional support is especially important now. Self worth and doubt sneak in sometimes. That is when I work my hardest to support and bring him my best.

Central line is out

We traveled to Huntsman today in order to have them take out his central line (hickman, port, or whatever you want to call it). After one office to the next and then the next, which was at the University Hospital, it was carefully taken out. Radiology, doctor, and a nurse assisted in taking the lines out without incident. Radiology lights the way for doctor to see what is going on and the nurse, assists. Keeping the dressings clean and dry is Dale's job now. If they want to draw blood, or give blood, they will use veins in his arms to do so. No more flushing the lines, no more blood thinning injections, no more blood clots. Moving right along schedule. Yahoo!

We returned home, and he took a nap. Well, we did have to walk some long hallways at the hospitals--natural exercising worked.

Cruel & unusual

I came home today being out for a few hours to attend church, and found the keys on the counter and an empty McDonald's drink glass. I said nothing but inside, stewing up some comments: Fine! If you think you can start driving already and eating fast foods, you are on your own, buddy! You know what the doctor's orders are as well as I, and McDonald's and driving are not on the list. However, I said nothing and begin to make myself my dinner and begin talking about other things to Dale. He eventually volunteers that he had not gone anywhere, had visitors for awhile who left the McDonald's glass, and that he put the keys on the counter to get a reaction out of me. Cruel and unusual punishment for my complete devotion to Dale's well-being. Good thing I know how to advert the focus.

But that means he is feeling better, trying to get a smile, and wanting attention. But it still was not very funny! Diarrhea seems to be gone, weakness continues, and he chills easily. One day of many healing days to come.

Out for a drive

We took a drive today taking advantage of the sunny winter skies. It was nice to be out, however, once we returned home, Dale took a several hour nap. We were out long enough to indicate he has better bladder control today. That is good news. He must be healing. We both need to pay attention to his fragile condition and realize he needs to build up the stamina gently. It will take time and lots of it. Dale keeps the positive outlook and continues to endure with great strength. He told me I have only been "testie" twice during all of this time. Good thing I know how to hold my tongue because I think things sometimes that may be construed as "testie" but I deal with those thoughts silently not to interfere with Dale's emotional state. He needs all the goodness I can muster up giving. Sometimes, I admit, I busy myself with stuff enabling me to regroup and come back and care take with kindness. We are both doing alright and know each of us need each other's support. Kind of sweet,eh?

Bonus day

Doctor's appointment went well today. Blood levels are doing what they are supposed to do. Doctor was actually surprised how quickly Dale was released from the hospital from the transplant. Dale is like the textbook example, sans the continuous diarrhea and nausea. He told Dale people normally stay at least 3 or 4 days beyond what Dale did. However, because of the consistent issues from the last chemo-treatment, the doctor wants to see him one more time making sure Dale continues to heal.

This doctor will see him next week to finalize this phase and then at 100 days and one year mark. At each of those appointments further testing will be done, as they were to begin the bone marrow transplant process, to make comparisons in the healing. In the meantime, radiology will check him over ensuring there are no cancerous tumors anywhere. That appointment is yet to be determined when it will be.

Another bonus: the central line will be taken out on Monday. No more need for it especially since it causes the blood clots. I will not have to inject him with the enoxaparin after Sunday morning so blood clotting will be okay to take the line out. Nor will I need to flush the lines anymore after Monday! Healing is on the way. Yippee! But what do I do with all those supplies (injections, flushes, etc.)?

This morning's activities, though, wore Dale out. The heal will be s--l--o--w! From this point forward, as far as I know, there is only checkups and healing on the way. Dale will go back to his mantle cell lymphoma doctor in the next couple of weeks and I think they will also do their checkups periodically. Nurses insisted that Dale needs to take time to heal properly and not try to rush into normal routines. I need to ask about the continuous face mask requirements, immunization time schedule, and restricted cooking guidance.

Life's transitons

Dale's day brought more diarrhea and a much weaker state. We thought we would go for a drive today, just to get him out of the house, but the thought of bringing a porta-potty with us-quashed the idea. His appetite is nothing, yet he knows he should eat. We go through several suggestions and options before we agree what he will eat. He said: "I don't know why I am so weak!" My answer: "It is because you haven't had ice cream for a long time!" Dale responds with: "I don't think I will ever eat ice cream again..."

No more ice cream sharing!

My reaction: so sad! One of the simple pleasures of life! I suppose he has come to the necessity of becoming a person who eats-to-live instead of living-to-eat. Sad transitions of life's changes.


But think about it, Dale has been horizontal for the past seven months, in hospital beds, couches, or bed at home. He does not walk further than the bathroom or kitchen, and on a good day, down the stairs (and eventually back up the stairs). Muscle tone is gone. He needs physical therapy and a trainer to come in and get him conditioned in a manner his body can handle. My gentle persuasions haven't worked.

Sunshine

After thinking Dale was slowly getting better, he reports that he feels lousy and quite weak. The home nurse changed the dressings and he seems okay, but ongoing nausea, restless sleep, and diarrhea keep him  wondering when it will all be done. His gag reflex is high, which does not help much. Appetite is sensitive and I have a hard time anticipating what he thinks will work for him.  I spend my time making sure the house is clean of dust and germs, washing extra laundry loads, cooking Dale's wishes, and care-taking on demand.

I am so glad the sun is shining strong today.

Still healing, albeit slowly

Dale's nausea and diarrhea is still there, he can't stay upright very long before he needs to lie back down, and appetite is so so. Nights are restless and uncomfortable, days long and on the edge of sickness. He describes the nausea as though he was just about to have the flu or just getting over the flu-never quite done with it, though. His discouragement factor remains high, patience wavering, and he just wishes it would all go away for him to get back to productivity. This is a long, long ride on the cancer roller coaster. He is progressing, just slower than he hoped it would be.

Still blessed

The weekend brought a one good day to stay home and the other day to enjoy winter's beauty. It also brought good neighbors leaving sweet treats on our doorstep, shoveled steps and sidewalks from the new snow fall, and new faith in the divinity of God. There really is something magical about prayers. Praying for, praying about, praying to, praying with, and so, works. Science does not know how, however, the heart feels and knows it. Dale reports that my meatloaf really "hits the spot" and mellows the nausea. He still battles nausea and feels discouraged with ongoing diarrhea. His skin regenerates itself now so rash is gone. He slowly heals one cell at a time and these annoying side affects will go away ... eventually. Lab work from Friday was very good. Blood levels going in the right direction. No concerns other than clarification from pharmacy to help with nausea conditions. Preventing it is better than trying to treat it. We continue to learn the sciences.

Ups and downs

First full day home brought ups and downs. Up because Dale is home. Down because of extra laundry loads. Up because Dale began to feel somewhat better. Down because nausea was pretty bad this morning. Up because Dale's bone marrow is producing enough cells to take care of the diarrhea rash. Down because there still is diarrhea. Up because the endurance and long suffering is not from cancer treatment. Down because endurance and long suffering is from the ongoing infection he continues to battle. Up because I got out of the house for half an hour today. Down because I was sent to the store for Dale's food cravings. Up because I did a lot of stair climbing. Down because Dale's walking was limited to and from bathrooms.

Slowly progressing

The first day home was uneventful compared to other days. His diarrhea is still there, nausea extreme, and very tired. He ate chicken for lunch, meatloaf for dinner, and said it was the best ever! Eating with nausea is difficult, however, Dale said the nausea medication worked better once he had some food. (Food heals all ailments don't you know!) I think he is just glad to be home. Dale was hoping to feel better quicker, but it looks like it will be a process. We were given instructions again of what to watch for, pharmacy instructions, and a congratulations! You have made it this far! We go in tomorrow for blood labs and next week to meet with his doctor. I was hoping to be able to do labs at Huntsman satellite by us, but with the specialized BMT part, that does not work.  They salted the streets in anticipation of forthcoming snowstorm, so the winter driving begins.

Transplant worked

Dale received more platelets today to regulate the blood clot. He also received his walking orders, i.e. coming home Wednesday; a day earlier than I thought. He is on the mend and doing well. I best go buy some Glucerna, bleach, and (extra-large .... ?).

Extra-large baby wipes

Fully grafted

Two pints of blood today came with good news about Dale's own blood: he is fully grafted. Yesterday's count was 200, today at 1000, yet he still needed blood. I believe the white count was good but the red count not good enough. They were pleased with his quick progress. The earliest he could come home would be Thursday, the latest...couldn't guess. It all depends on blood counts, his skin condition from the diarrhea, and eating. He had a sandwich yesterday, it went right through. Today he stayed with Glucerna shakes-a drink like Ensure for diabetics as they are trying to get him eating and off of the TPN. We went for a short walk in the BMT halls, got back in time for diarrhea. His nurse is incredible and anticipates his needs and makes sure they are met.

Dale feels better, the soreness is less, butt still there. He is positive and upbeat and getting excited about coming home. Me, on the other hand, feel some anxieties setting in. Much could go wrong at home and I get to deal with it in the hopes of knowing what to do at critical times. Granted, I have learned much in the past several weeks, however, the way they talk is a bit intimidating:

• He could turn in a minute, and he won't know it
• He'll have to wear the mask in public all the time
• He'll be good one moment and turn for the worse, the next 
• No sick people around, especially children
• Be careful in what he eats
• Wash everything, peal it, well-done cooking
• Clean the carpets, no dust, sanitize everything!

Perhaps I will just get a case of Glucerna, make him wear gloves and mask 24/7, and watch videos. We incorporated many of the guidelines along the way, however, now it is imperative to do so. But that is not where the anxiety comes from. I think it is the high demand of constant care Dale has gotten used to at Huntsman, that I will be expected to do. They put nurses on shifts for a reason. I think I can, I think I can, I think I can...two weeks, just two weeks and then what? At least the critical weeks will be done.

Catheters

Dale says he is doing better today, but that is after two catheters to empty his bladder and several diarrhea incidents. He seems to be more alert although feel asleep while I was with him in the evening. His appetite allowed him to eat a sandwich and so far, no negatives from eating. The nurse will give him another TPN (food bag) tonight. He already was given platelets but no need for blood yet. The discomfort from diarrhea still is main problem for Dale. Perhaps the bone marrow transplant will graft really soon and he can begin to produce cells he needs to heal. They know it has grafted when his blood levels maintain at 500 for three consecutive days. This morning it was only 200.

Jan! Jan! Jan!

When I called the nurse this morning, she reported it was a better night for Dale: less diarrhea and more sleep. She added that he kept waking up and saying "Jan! Jan! Jan!" Silly nurse, however, I can see him doing that. Dale's blood levels are okay, but the diarrhea has caused horrible skin irritations and the pain is intense. This is the main concern now, therefore, they are treating it carefully so the skin will not become infected and cause even more complications.

Dale has no privacy moments with the nurses although they treat him with great dignity and respect. He is not very talkative but enduring best he can and counting days until it is done, so he can begin counting days until retirement. He spends his time maintaining the suffering, thinking, and hoping for the best.

Weak days

Dale is quite weak as he receives a second dose of platelets today. He also has the TPN food bag dripping inline. He does not get nutrition any other way now. His pain level is 4 and his countenance is quietly enduring it. Each day seems to increase in its difficulty for him. Today he tells me that he is very sore from the diarrhea. I hate to think of that discomfort. Dale seems to be shriveling away this week. His vitals are stable although he rests most of the day without the TV. He must need the quiet. Nurses take good care of my Dale.

Same same

The nurse told me this morning that she was sorry to report that the night was difficult for Dale with lots more diarrhea, nausea, and little sleep. She sounded quite compassionate and hopeful that he would sleep well for several hours to give him respite from the porcelain throne.  Dale told me the same later in the day and is pretty much resigned to know this is how it will be for a few more days. He ended up with good blood counts today, so no extra blood or platelets. One more day down, and then some more.

Carry on

Two pints of blood and a pint of platelets today. Dale says he had a pretty tough day. They will probably have to feed him the TNC or TPN can't remember what it is called, but it is a big whitish bag of nutrients dripped into him. Nausea, diarrhea, add vomit and what do you get? A day with Dale. Nothing out of the ordinary going on, except it is happening to Dale and not some stranger we don't know. Poor guy. This stuff isn't supposed to happen in our household, but it is. Carry on, carry on! The CT scan was also alright. No significant issues reported.

Peach fuzz

It took two bags of platelets today before Dale's numbers stabilized. Diarrhea continues its presence. He has no appetite, yet has maintained weight perhaps because of all the fluids they pump into him. They prepped him for a CT scan this evening, but I don't know results yet. I am sure they are looking for some specifics.

Dale had a number of visitors today which is wonderful for his spirits. I also noted some peach fuzz on his head. He was pleased. I avoid peaches because a childhood trauma with hot peach fuzz, however, I can overcome peach fuzz when it comes to Dale's healing.

Hot peach fuzz for canning (don't know what those white things are, just a picture on internet of those terrible hot fuzzy skins that had to be pealed off)

Although winter is minimal so far, each time snow settled on our sidewalks and steps, someone valiantly cleared the snow. I am reading a thoughtful book that another gave to me at work as a "Candy Gram" SBO's do at Christmas season. We do not know who shovels the snow or who gifted the book, nevertheless, a thoughtful insight to us. It is nice to have people think of us and bring their service, kindness, and thoughts to see us through these stressful days. Dale and I are blessed with friends who care  and step in just as we need a boost. Thanks goes to each of you.

A busy hospital laundry

Dale had a night of constant diarrhea, nausea, and lack of rest. He'd get cleaned up and there it comes again! Bed sheets, bathroom, him, hospital clothing, oh dear. What a mess. I met one of the techs this evening, a very delightful young lady, without a care of her responsibility to clean the explosive bodily fluids. It continued the same throughout most of the day. It was not very pleasant for Dale. Doctors say this will probably continue for another four days. The chemotherapy kills the natural fluids necessary for the digestive system to function and so it creates an environment of the necessary elimination the only way it can: diarrhea. Better their laundry than mine-this week anyway. This too shall pass...

I am glad toilet paper was invented

Today is BMT day 4 and 11 days of hospitalization at this point. We anticipate another 10 days, but that is our guess. Dale is beginning to become neutropenic, as expected, which means his blood levels are getting low, therefore, blood transfusions will soon take place. He is upbeat, talkative, and trying as hard as he can to be a "good patient." If you have tried to call him and he does not answer, it is likely because the diarrhea called first. He always tries to answer that call before all others.

Platelets today

Dale is right on schedule. His platelets are low as predicted so they will give him some. Blood counts were okay, although it is anticipated that those will need to replenished a few times along the way until the transplant is grafted. I am amazed at the science, the minds experimenting, and the successfully used techniques. Someone had to think of it along the way and some patient had to be the first. Thanks to all those that contribute to the world of science.

Getting through each day

Dale's days of feeling particularly lousy, have begun. Diarrhea, vomiting, nausea, and zero appetite has set in. When I got to him this afternoon, he was very quiet but said, "well, it's started so that means I have fewer days left to stay here!" He is working hard to make the best out of all of it. What a good guy! He is mine and I am keeping him. Dale's attitude through the past several months remains positive as he suffers each ailment of the treatment. He will get through this, one day at a time.

New Birthday

January 5, 2012 is Dale's new birthday. Immune system as fresh as a new born baby. The staff brought him a blanket and sang "Happy Birthday" to him while he received the bone marrow transplant today. It was uneventful, except for Dale's normal nausea and chills. Chills come from the transplant. They come in a container in frozen cassettes, defrosted in a warm water tub, then into his IV line. The 13 bags took a couple of hours with both the technician and the nurse with Dale the whole time.

Happy Birthday

Stem Cell Replacement

He should do okay for 2-3 days and then it hits. We'll see what that means for him. The nurse was helpful in telling us what to expect. They will keep track of everything, and when his levels get at a certain point, he comes home. There will be a very awful week of extreme fatigue, nausea, and loss of appetite, so they have to help him through that. Here he is today:

Doing fine

BMT today

Dale has done well in the last two days. Final chemotherapy was yesterday with no incidents. Today the bone marrow transplant happens. Nurse tells me it is uneventful. They bring in the machine, hook him up and drip in 13 bags of his harvested stem cells which should take about three hours. Since it is Dale's stem cells, the only reaction could be from the preservatives and there is medications to help with that. I am hoping it is uneventful.

Dale is excited that he thinks his beard is beginning to come back, although that means shaving again. What a delight!

Toxic waste

Dale felt okay today, although they had to bring in the toxic waste cleaners because he had a bit of an accident in the middle of the night. The chemo/urine mixture is not healthy to have sprayed around the room. He also has a port-a-potty next to his bed in case he needs it, quickly. He tells me all the cords hooked into him and the IV stand got tangled and he could not get out of bed quick enough. Makes sense. Poor guy. Probably not the first time such a cleanup has happened. Hope there are not too many more for Dale. He has a chemo tonight, then one more tomorrow. The next day will be the bone marrow transplant. After that, who knows? It will depend on how he is able to take it. One day at a time.

I am glad Dale is doing as well as he is
I am glad that happened at the hospital and not at home
I am glad Dale is at this point so much earlier than we anticipated
I am glad the weather is cooperating with my excessive driving needs on potentially snowy roads
I am glad others in my doctorate cohort are getting their proposals completed. Gives me hope it is possible--eventually

Glad game time

Dale is surviving the treatments, but it is not very fun. Nausea, chills, and diarrhea prevail now. He slept some of the day with cat naps and looked more rested. His appetite is down and energy level sinking. I suspect a blood transfusion is close by. He maintains a good attitude, mine is so-so. I am weary, feel incompetent, and don't trust decisions I make. Its time for the glad game.

I am glad for my eclectic music collection
I am glad I have caring, understanding, and supporting friends, co-workers, family
I am glad I was able to meet with a nice family from Connecticut "school searching" today
I am glad we have such a flexible staff to accommodate our students
I am glad that I love my career (although feeling out-of-sorts and incompetent this year)
I am glad a mistake I made today was quickly and unobtrusively found then quietly corrected
I am glad the guys are watching out for me
I am glad to each of the students who called me by name in the halls just to say "hello"

I am glad I am feeling better: listening to music and playing the glad game--good combination

Endurance

BMT Day -4 brought nausea on. Chemotherapy will continue today as it did for day -4. I think the doctor said the same two chemotherapies will be given for days -4, -3, and -2 and then another one on day -1. Problems will be intensified each time-headache and nausea for Dale. The doctor told us " just another boring day of chemo." Boring is good. Dale is quietly enduring the treatments and worries about many things he wants done that he is unable to do now. I told him some things will just have to wait, his health care trumps all other things. He did not like that answer. It would be nice to do what we like to do, however, if we don't follow the medical process, we won't get there.

BMT Day -5

Dale's first chemo turned out to be vicious. His excruciating headache dominated the night lasting through different medications until doctor allowed for double dosages. That helped, but Dale did not get much rest. He appeared flushed and swollen to me, probably because of fluids and pain medications, however, his spirits were okay. He says the staff is not as social as he likes but while I was there, one of the aides was fun; that make Dale feel better.

Two more chemotherapies were given to him during the day, with little problems, so far. It will come, they said, probably next week. Looking forward to that. A great way to begin a new year.