4.28.09 & 4.28.09, Bumps in the road to ambulatory care

Craig still wasn't feeling well onTuesday, so he went to see Dr. Meyer. Craig was dehydrated and went to ambulatory care, where chemotherapy is done, for a liter of fluid through his port. He had perked up by evening.

This morning he felt horrible so we checked his standing and sitting blood pressure and pulse. There a was difference between the pressures and pulse was high. Back to ambulatory care for 2 liters. After the fill-up, Craig actually smiled. He seems OK tonight.

4.26.09, Day 23. There's still a long recovery ahead.

It's good to be home and getting back into our normal routine. We're still working on getting thank you notes and a Christmas letter out.

Carl wondered when we were going to Rochester in April. He was happy to hear we won't go back until late June.

Craig's appetite is improving, but he still does not feel well. It will take some time for him to get back to the same level he was before going to Rochester.

We received a forwarded email and this was part of it:

FRIENDS: will visit you in the hospital when you're sick
SOUTH DAKOTA FRIENDS: will cut your grass and clean your house then come spend the night with you in the hospital and cook for you when you come home

We found out this is true. Craig and Gail

Day 21, 4.24.09. There's no place like home.

Wednesday morning Craig had his exit visit with his doctor and nurse coordinator. Thursday morning Craig had an opthamalogy consult. The doctor told Craig the same thing Dr. Beemer in Pierre told him. We finished packing the car and headed west.

We met my sisters, brother in law, mother and Carl in Sioux Falls. We loaded Carl's things in the car and headed home to Pierre. Tonight Carl said that mom was home to stay with him.

Craig is tired tonight. Harmons brought a delicous dinner over. Craig ate the most he has since the transplant. Bobbi from Craig's office dropped off a care basket and we are still enjoying the care basket Alan sent to Rochester.

Craig needs to have blood work done next week and we don't have to return to Mayo until late June.

We truly appreciate all the help and prayers. Gail

Continuation of Day 21.

There was a message the internet connection was lost, so I published quickly.

Back to Craig's cousin Margaret Eichstadt Affeldt. I had met her mother Hertha and immediately recognized Margaret because she looked just like her mother.

We had some excitement tonight. Someone burned dinner and set off the fire alarms. It never hurts to have a drill the the worst consequence is that it took some time to get the elevator working again.

Day 18, 4.21.09. Unless there's an unexpected bump in the road, Craig will be released Thursday morning.!

Good news is Craig's blood counts soared today. White blood cells and platelets are in the low normal range. His hemoglobin isn't normal and Craig is fatigued and has nausea yet. It's going to take some time to recover from the chemo and for Craig to back to his precancer level of energy.

Craig met one of his distant cousins for the first time today. She and her husband live 25 miles from here. She left Wolsey before Craig was born.

Day 17, 4.20.09, Counts and nausea are increasing

Rain has fallen here on and off since Saturday afternoon. It's cold and windy, but better than snow.

It seems everything can't improve at one time for Craig. Nausea has bothered him today and he's decided a 12 hour IV medication is helping. That's no problem since he's still going in to the clinic twice a day for a check up and antibiotic.

The good news tonight is that his blood counts have increased dramatically since yesterday.

No doctor has even hinted at a time he can be released. We're optimistically packing up a few things from the room and eating the food in the pantry and refrigerator.

Kay McClain from Craig's office surprised us with a visit. She brought her son here for tests and they were on their way out of town. It was good to see a familar face and so thoughtful of her to stop.

We've had a few visitors during out stay. Craig's cousin Kathy and her husband Rich stopped on their way home to Wisconsin. The minister, vicar, and lay minister from Trinity Lutheran have been here several times.

There is a rapid turn over of people staying here. It's good they are well enough to go home, but we miss our new friends.

The people waiting for organs stay here the longest. It's difficult to watch their physical condition slide downhill. This has reinforced our believe in the importance of donating organs. The positive aspect is that as soon as they receive the organs, their physical condition improves dramatically and quickly.

Day 16. 4.19.09. Craig has the "neutrophil glow."

Craig's hemoglobin, platelet, and white blood cell counts continue to steadily increase. This is good. Today Dr. Lacy said Craig's face looked rosier, which is a sign of engraftment for neutrophils. Neutrophils are one of the 3 kinds of white blood cells.

When neutrophil counts are over 500 for 2 days in a row, serious consideration can be given to sending a patient home. Craig's are at 150. We hope he may be released at the end of the week, but there are no guarantees. We'd like to go home tomorrow.

Craig's days are gradually improving, but he has his good and not so good times of the day. Evenings are more difficult. He still has to go into the clinic every evening at 8 pm for an antibiotic.

Craig's hair is thinning somewhat, but it looks fairly normal. This has caused some jealousy with female myeloma residents.

Craig is eating more every day, but I'm still eating more than him. This makes meal preparation easier. I don't have to worry about fixing elaborate, tasty meals. I just put food on the table and he eats some of it.

Yesterday and today it rained here. Rochester has had an open winter since January and the rain is needed. Gail

Day 15. 4.18.09. Neil and Carl left

When Neil and Carl left today it was very quiet and lonely. My mother and sister met them in Sioux Falls for lunch and took Carl to Akron. Neil headed west on I 90 and got to Rapid City in early evening.

After the clinic visit, Craig and I went shopping to get out of the house.

Craig mostly sat in the car while I bought groceries and looked at clothes. It was a a warm spring day. We both went into a bedding store and bought new sheets because Craig was tired of the white ones. Gail

Day 14. 4.17.09

Day 13. 4.16.09

To be filled in

Day 12, 4.15.09, Another bump in the road

Craig had a restless night and his chest was rattling to the point of keeping Neil and me awake. He said he felt better, but we went to the 24 hour transplant unit at 6 am.

It doesn't appear he has pneumonia, but there is some infection. He got fluids and antibiotics by his catheter.

The good news is his counts are going up despite the infection. He remained an outpatient. Today at lunch he said food wasn't repulsive any more. He needs to get IV antibiotics twice a day.

Craig got a huge poster board get well card from the team members and appraisers at the state DI tournament. Also a huge structure and t shirt, bag and pins. That cheered us both up. Gail

There are some typing errors in the blog. For example, she calls this a "fist attempt" to add a picture to the blog. While working with the computers has been frustrating at times, taking a fist to the computer has not been a solution we considered. Outside that, we have Neil's computer, which works much better.

Craig

Fist attempt to add a picture to the blog. Carl's prom as a junior.

I've been working on Neil's computer and went into his picture file. This is a nice one of Carl. It shows that inclusion in education is better than segregation.

Day 11, 4.14.09 Craig is out of the hospital

Craig is making his own platelets which the doctors say is a good sign. Usually the white blood cell count goes up first and then the platelet count, but we'll take any good news. He left the hospital this afternoon. He wishes he felt better, but that should improve as his counts go up.

It 's nice having Neil and Carl here. It will be pretty quiet when they leave.

Carl feels comfortable in the house now. A gentleman who received a new kidney a couple weeks ago usually plays his concertina in the evening. Carl hadn't seen one before.

Tonight Carl and I read in the library. The last book Carl and I read together was A Journey to the Center of the Earth. Grandma Carlson didn't especially like that one, so she picked the next one. Carl and I decided to put that book on hold and are reading Peter Pan. I'm ready to go back to Jules Verne. Gail

Day 10, 4.13.09. Craig has improved since noon.

There still isn't a timeline for Craig to be released.

It's nice having Neil and Carl here. We visited him this morning and he seemed about the same. Carl and I left to eat lunch and Neil stayed.

I didn't get back to see Craig until dinner time and I could see he was feeling better since noon. There are some signs the cells might be engrafting.

We brought the laptop to the hospital tonight and found him watching the Twins game. Now Craig is working on Turbo Tax.

The three of us will leave when Craig takes a shower.

Easter Sunday

Craig's situation is basically the same. He doesn't feel well and his white blood cell count is low.
The doctor says he'll be in the hospital 2-3 more days.

Neil and Carl arrived last night for a late dinner. They took my mother to Sioux Falls and met my sisters and most of their immediate families for lunch. Mom headed back to Akron. It was nice she was able to help out.

We three came over to the hospital to see Craig. Neil and Craig think the hospital complex is quite impressive and the tranplant house is very nice. Gail

Day 8, Almost Easter

Tonight Craig and I talked after I walked to the house from the hospital. He was able to drink a can of pop and milk and Instant Breakfast. This is an improvement from not wanting to think about food. He said he felt better than yesterday. I think he's better, too.

Neil, Carl and my mother will drive to Sioux Falls and have lunch with my sister Karen. Karen will take Mom back to Akron and the men will drive on to Rochester.

Day 8, 4.11.09

Today Craig sounds better. He's eating lots of Cheerios and milk. He's off the IVs, but we haven't heard any talk of release.

Day 7, 4.10.09

Craig didn't fell well and ate less. His doctors say he's doing fine.

Day 6, 4.09.09. There's a light at the end of the tunnel and we hope it's not a train.

Craig looked better today and is getting enough calories and protein. He ordered a bag a potato chips, but didn't think he would eat any. They tasted good and he ate the entire bag. Empty calories are still calories and we've decided potato chips are a miracle food.

He does not feel well and his counts will probably drop more tomorrow. No one has said anything about him getting out on Friday. Today the head of Internal Medicine and a group of doctors came in to see him. Yesterday the doctor who saw him was wearing yellow rabbit ears and telling everyone Happy Easter. He wasn't the head of any department and didn't have anyone following him around.

Craig's primary doctor, Dr. Lacy, sees him at the beginning and end of treatment. During the treatment, there is a team of 13 doctors who only work with transplant patients and rotate seeing all the patients. Gail

Day 5, Bump in the road

Craig surprised us today. Keeping him hydrated is a challenge and we expected he would need more IV fluids today even though he's drinking more than the suggested amounts of fluids.

At his daily check-up, he stood to be weighed and passed out. Luckily, his nurse today was a man about Craig's size and he was able to catch him and lowered him to the floor. His doctor decided he needed to be in the hospital for continuous IV fluids and safety.

Today and tomorrow should be the worst days for Craig. When I went back to see him after dinner, the nurses thought he had perked up some. He might be there for several days. Gail

Brief comments,

This is from Craig direct.
I have not contributed to this blog much, as I have had some difficulty with typing given some of my medications. This has been an experience I would wish on nobody, but at least there are valid and usually successful treatments, unlike the situation 10 to 12 years ago, when people mostly just died from this disease (multiple myeloma.)

The process is not fun, as I have to push water other liquids and foods. When you simply are not hungry for much of anything, you still have to eat. The more calories the better, and junk foods are just a good as really nutritious stuff. I have health care providers telling me, "Have another cookie, piece of pie, and so on. They are good for you! The nutritionist was delighted when she heard I ate 7 Girl Scout Cookies.

This is my life for the moment. I hope all is well with all of you, and that you are still praying for me, thinking of me and keeping up on my blog (!)

Craig

Brief comments,

Day 4, Roller coaster day, 4.7.09

Good: Neil and Carl will drive here on Saturday. Neil will stay with Craig and Carl and I will go back to Pierre. Carl is ready to have one of us back home with him and I'm ready to spend time with Carl. It will be good for me to get back into the office.

Bad: There are 2 groups bringing in dinner in one week while Neil will be here. It's not fair he'll get those nights off from cooking.
Deleting 4 weeks of emails won't be fun. I intended to unsubscribe to Listserves and didn't get it done before I left.

Good: When I get back to Rochester and Carl is in Omaha with Anne, Craig will be feeling much better and can help me with dishes again. Gail

Day 4, Roller coaster day, 4.7.09

Bad: Craig isn't feeling very well, hasn't since Saturday and he hasn't hit bottom yet. That will probably be tomorrow.

Good: When his white blood counts increase, there should be a dramatic improvement quickly.
Good: No inpatient stays and medical staff is being proactive with IV fluids to keep him as an outpatient. No infections yet.
Good: I haven't had to change the dressing on his catheter in 10 days. I'll talk nicely to his nurse tomorrow to see if she'll change it. It takes a nurse about 4 minutes to change one. I need to review the video, read the book and go through $20 of dressings and leave part of a sterile glove on the dressing to be successful. Earplugs would be helpful for both of us since Craig worries aloud when I work on the dressing and I say a few discouraging words.

Day 4, Roller coaster day, 4.7.09

Bad: our laptop isn't working well even though I've run every cleaner and defrager on it. We keep losing the blog site. The computer in Pierre isn't working at all, so we'll have to rely on cell phones for communication with Carl and my mom.

Good: a group brought in soups, fruit, and cookies for dinner. The wild rice chicken soup was at the end when everyone's dish was full, so there was lots for Craig.

Day 4, Roller coaster day, 4.7.09

Craig said this was a good and bad day. Breakfast and lunch were good when the food was on the table. The bad is his mask is suffocating at times and he doesn't feel like visiting with others at the house.

Good news is his calorie intake is high enough and he just needs to eat more protein. He needed another 2 liters of fluid, but his weight was up from yesterday

4.7.09, Day 4, Roller coaster

Craig said this was a roller coaster day. Some things were good and some were bad. Breakfast and lunch were good once the food was on the table. Craig needs to walk and I suggested he go to the kitchen and collect his breakfast. That wasn't good when he hadn't eaten. He did get cereal and then I made a banana pancake for potassium and lots of calories from butter and syrup.

Good news is the's getting enough

4.7.09, Day 4, Roller coaster

Craig said this was a roller coaster day. Some things were good and some were bad. Breakfast and lunch were

Day 2 & 3, 4.05.09; 4.06.09

Yesterday Craig and I attended church. Craig was uncomfortable and sweating with his mask, so we left early. Everything was OK at his daily checkup, but he didn't feel the best.

The remainder of the day we rested and snacked on foods Craig found appetizing. That's mostly cold foods, beverages, pudding, and jello.

Today Craig was a little dizzy and needed a liter of IV fluid at the daily check up. He felt better after that and was able to eat more. He's still losing weight, so he needs to get more high calorie foods he finds appealing.

We were at the clinic long enough I was able to attend a string and flute trio concert. It was sponsored by the widow of Meredith Wilson, the original music man.

The predicted 3-7" of snow missed Rochester completely. The sun is shining today, but the wind is cold. Gail

Day 1, 4.4.09

Craig and I were both tired today. Yesterday's stay at the hospital was 12 hours instead of the expected 8.

Today we went to the clinic for Craig's daily appointment at 9:30 am. No big changes or problems.

A volunteer from Trinity Lutheran Church brought over a couple of hot dishes for us. We really appreciate the food and the support from the church.

This afternoon we slept.

Snow is predicted for overnight and into Monday. We hope to attend church at 8 am and then go to the clinic. The rest of the day is unscheduled. Gail

Transplant is completed. Now we wait for engraftment.

Craig received 11 bags of his own stem cells in about an hour. I watched as the nurses triple checked the name on the bags. One bag was thawed in a water bath similar to a double boiled, transferred to a syringe, and the contents were slowly pushed into his central line catheter. This was easy compared to the weeks of tests and collection.

Now he's feeling good and napping. He was given anti-nausea medicine, including Benedryl. That made him sleepy, but it has worn off now.

We will be able to leave about 4:30 pm when his IV bag is empty. He needs lots of fluids to help eliminate the preservative from his system. It is exhaled and there is a smell of creamed corn. This might last a couple days. He also needs lots of calories and to walk as much as he can to prevent pneumonia.

I'm ready for a walk in the clinic and a cup of coffee. Gail

Day Zero Transplant Day

Craig and I were up at 4 am to arrive at Unit 94 by 5:30 am. Craig's started on 4 hours of IV fluid before the transplant.

Yesterday's chemo did not produce any ill effects. Craig does not like wearing his mask, so he stays in the room quite a bit. He doesn't have to wear it there.
Gail

Day -2, chemotherapy and the time to start eating as much as possible

This was another busy day. We bought groceries for chemotherapy effects this morning while Wal-mart wasn't busy.

After these were stored in the transplant house, we went to the clinic for the first day of "killer chemo" of Craig's bone marrow and also picked up new medications. Craig will be on penicillin for the next year.

The infusion through Craig's central venous catheter took an hour. He needed his mouth cold for the hour. Why we don't know. He was forced to eat ice cream, ice cream bars, and ice chips. This will be repeated tomorrow, Day -1.

Friday, Day 0, we need to be at the hospital at 5:30 am for 8 hours of infusion of cells. The first 4 hours are for IV fluids and medication to overcome the side effects of the preservative in the frozen stem cells. Next, 22 bags of stem cells will be thawed in a water bath and infused through the central catheter. Then more IV fluids will finish off the day.

Now is the time Craig needs to eat high calorie foods. This is completely different than the way he's eaten for years. Later, it will take major effort for him to get 1000 calories per day. It made shopping today different from usual. He was able to indulge his taste buds and will be having whipping cream on his cereal and in his tea. He's looking forward to Culver's 850 calorie chocolate shakes and I'm expecting to gain weight from the change in diet.

For the remainder of Craig's stay, he will be checked once a day at Unit 94, the transplant in and outpatient wing. We hope his regular appointment won't be at 6:30 am.

The chemo side effects won't hit for about a week. Craig is wearing a filtration mask for about 3 weeks except for when in our room, showering, sleeping, or eating. We're washing hands often and carry hand sanitizer.

If he needs to be hospitalized because of infection, it will likely be around Day 7 to 10 when his white blood cell count is about 500.

If all goes well, we may get to come home the end of April.

It sounds like all is going well at home for Carl. Craig's parents stayed with him for 2 weeks. Jean Carlson, my mom, is with Carl now for a couple weeks. Carl has been able to follow his regular schedule except for missing a couple days of work due to a very sore throat.

When we talk to him, he sounds happy. Mom said today he asked if his mother was ever going to come home. When we told him about the stay in Rochester, he said we couldn't go and we had to stay home with him. As the time got closer to go, he said he wished we would stay home. But when we said good by at the Special Olympics state tournament, he was fine and happy to be with his friends on the team.

Gail

Ely, MN is vying for the 2016 summer Olympics

This was a major news item in Rochester. April Fool!