Doctor visit today

First of all, to catch up...Dad went Saturday morning to the hospital to get his last blast of steroids needed for the first round of chemo (his regular oncology office was closed on Sat.). He also received the great and powerful Neulasta shot. The weekend found him a bit puny feeling...he had some nausea (no throwing up) and he had to take an anti-nausea pill once or twice over the weekend. He ate mostly mild foods...I made some home-made potato soup and some chicken noodle soup. He had some heat issues with his head ...sort of a face and neck flushing...from the steroids...off and on, but got through that. On Monday, he started getting a loud ringing in his ears...he said it sounded like crickets. That went away some, but followed by some hearing loss. That has been coming and going and is still a slight problem. As of Monday, he is eating regular food. I've been trying to use more red meat (ugh!) to bump up his hemoglobin and he's found that eating smaller meals with healthy snacks in between works well. He went back to work full time on Monday and is doing fine with that. He gets a little tired slump early in the morning, but a Nutrigrain bar or a homemade banana muffin gets him going again. He's made it til 5:00 each day.

Now...to today. We met with his doctor and found out one thing...this particular chemo recipe is what the doctor called "the mother of all chemos". Dad said he knew it was some sort of horse-kicking stuff. So all in all the doctor was pleased that Dad just had minor nausea and he understood the tiredness...that's to be expected and then some. He was concerned about the hearing loss and will be assessing that next week and before the next treatment. It is a result of one of the chemicals that effects the nerves and can effect hearing. He said that with this chemo recipe that a transfusion probably will be necessary....the doctor said his blood was probably flatlined...it can really wipe out things. He was waiting for Dad's blood results to come back and thought a transfusion might be needed today due to the types of chemo Dad had. I was concerned about Dad working with his blood compromised so I told the doctor that Dad was back to work. He said that was great...that he likes to see that. So we go back next week to check on things...blood work and meet with the doctor. The doctor said the following week he wants Dad to start the chemo on either Monday or Tuesday so Dad wouldn't run into the weekend following that. So with that, the doctor left the room.

The nurse came in shortly after that with Dad's blood results and she was very impressed and said Dr. Hutchins hadn't seen the results, but he would be very happy with them. Dad's white blood cells are NORMAL and red blood cells just a tad below normal and hemoglobin is only slightly below normal , but what the nurse called fantastic. So we were very happy to see those results.

Dad has already headed to work and I'm also headed to work. I'll report in after next week's doctor visit.

Friday

It was a very short night. Dad slept really well for the time that he slept. He felt good this morning and had breakfast and off we went at 8:00 to the oncologist's. He just got a drip of decadron this morning and it was just a half hour deal...so that was a breeze compared with yesterday and the day before. Dad thought he might be able to go to work this afternoon, but he's just way too tired so he's heading down for a sleep now. Hopefully we both can get caught up in sleep this weekend. The only commitment is to head to the hospital tomorrow morning for him to get another dose of the decadron. This time he goes to the infusion lab and not a hospital room so that in and of itself should speed things up. In fact, at the hospital we don't even need to go through admissions...just up to the infusion floor.

at home

It's 1:45 AM and we just got home from Dad's chemo at the hospital. All was going well, except the bag of chemo that decided to form a vacuum within the bag and therefore what should have been a 3 hour drip was a 5 hour drip...because they had to keep fidgeting to get more out. It was a rare occurrence, but it has happened before. Dad was able to get about a 1 1/2 hour snooze in, but that's not much...and it's way past Wopner now. We have to be to the oncologist's at 8:00 tomorrow morning so it will be another very short night. Dad is doing well...other than being tired. I'll post more tomorrow after we get back from the doctor's. Dad just gets a shot (or maybe a drip) of decadron (the steroid) tomorrow and that's it...so it will be fast. I'm heading to bed now.

Thursday evening

Well, we got to the hospital at 6:45 and Helen had everything ready so Dad was up in a room on the oncology floor by 6:55...not bad. Dad is feeling much better this evening. He had some soup for dinner before we came here and is doing fine. The room is nice...a regular hospital room...and the nurses are very nice. This is the same floor that I was on when I had my gall bladder surgery in January.

They had to order the chemo...they don't mix it up here until you get here. So it took awhile to get the bags of chemo to the room and he has just finished the bag of steroids and will soon be starting the main event chemo. The timing is nearly perfect...it's 8:30 and the chemo this morning was given at 8:45...so almost exactly 12 hours.

Ah!! Brahm's Lullaby just came on over the intercom...it means a baby was just born here...I love it!

Back to Dad...well, it took awhile to hook up the main chemo...it was about 9:00 and they said it would be a 3 hour drip...so we'll be here until midnight or so. Dad is currently watching tv, but I hope he decides to take a nap in awhile. I'll either post more tonight, or I might wait until tomorrow morning.

Thursday afternoon

Dad hasn't felt very good this afternoon...sort of puny. On the way home this morning, he thought some chicken soup sounded good for lunch, but by the time we got home, his stomach was upset so he took a zofran pill. He's had the prescription for this since his chemo in '09 and never used it. We threw out the old pills and got new prescriptions a month or so ago...just in case he would need them. Good thing...he needed them today. So he's been taking it easy in his recliner...trying to nap here and there. He still hasn't had any lunch...not quite up to that. We will need to leave in about 3 1/2 hours to go to the hospital for him to get the other dose that has to be administered 12 hours after this morning's dose.

I decided to take on the patient's advocate job and I called the hospital to find out some details....good thing...the oncology charge nurse wasn't aware that he was coming in. He did some checking and quickly found out the details. So he said to come in about 7:30 (wrong!) for an 8:45 infusion and to check in with the ER to get admitted since admissions would be closed by then. Soooo I then called admissions to see if I could preregister him because I didn't want Dad sitting around the ER room with all the cooties of the universe. Well, whom should answer the admissions desk but Helen...a very nice woman who has admitted Dad so many times for scans, biopsies, tests, that we are now friends. I saw her several weeks ago near the elevator at St. E's and she asked how Dad was doing. So back to today...she said she would have all the papers ready to be signed (since she knows us) and she would be there til 7:00 but said she would wait until we got there. I told her we would be there more like 6:30 or 6:45 for sure. That was really nice of her to do that and nice to know things will be ready.

So for now, I need to figure out something for Dad to eat that will be easy on his stomach before heading off to the hospital. I plan on taking Dad's laptop with us tonight so I can do one last post today to let you know how he's doing.

Thursday AM

Well, we were up bright and early this morning so Dad could get started as early as possible today. Dad didn't sleep very well last night...not as comfortable sleeping with the needle attached to the port...he can only lay on one side...and then the decadron that he got yesterday (the steroid that's needed to counter any allergic reactions to the chemo) ...it can also cause agitation and makes it more difficult to sleep. Anyway...Dad woke up a bit early and had a good breakfast and started hydrating with plenty of water, orange juice and coffee. He's now hooked up and getting more of the decadron and saline solution. Actually, that just finished and they just hooked up the main chemo of the day. It will take 2 hours for it to drip in. The hiccups started up this morning so he's currently trying to get rid of those...he found last time that taking a Maalox or 2 sometimes cured it.

We've already seen some geese and ducks fly by this morning...outside the window here in the chemo room. We're still looking for the elusive fox that sometimes is seen in the fields outside.

Dad is currently listening to his mp3 player and trying to get in a short nap. He had planned on going to work after this morning's treatment...and before this evening's treatment, but I think those plans have been changed...he just needs to lay low today. And it will be a long day with the 2nd dose given this evening at the hospital. This chemo was started at 8:45 this morning so we will probably need to be to the hospital around 6:00 or 6:30 in order to get admitted, get all the prelim stuff...including more steroids and then hopefully get the major chemo in the vicinity of 8:45...give or take. That's the goal anyway. So that means that we won't be home until around midnight...then back here (to the oncologist's) at 8:00 AM for another injection of decadron.

So that's the drill for today. I'll keep you posted as to how things go later today. Thanks for all the positive thoughts and prayers...keep them coming!

Newspaper editor drug started

They just started the "newspaper editor drug" (see Shanna's comment earlier). It's a 1 liter bag and takes about 1 hour and 20 minutes. Then there are 2 more liter bags to go (of saline solution) to flush the system....those will take about 1 hr and 15-20 minutes each. So we should be out of here by 6:30, give or take. Dad is doing well...he ate lunch and is eating some salty pretzels to encourage him to drink more water. He's been doing some work on his computer and we've played some cards. All is going well.

Day 1

Dad is currrently hooked up to his dancing partner and has received the usual pre-meds (anti-nausea medicine, stomach coating meds, and benedryl...oh, and steroids) so given the fact that he has had benedryl, he is currently zoned out in the recliner, sleeping. They are loading him up with 4 liters of fluids today (plus he is drinking lots of water) to flush his system out due to the fact that one of the chemicals today can be hard on the kidneys. So all is going well, he will be probably sleeping until lunchtime, unless his teeth start to float before that due to the fluids, then he can go dancing with his partner to the bathroom!

Ok, Shanna, this info is for you. Everyone else, you can read this until your eyes begin to cross...or maybe you might find it interesting...I do...even though I don't understand it.
The chemical that needs to be flushed out of the system as quickly as possible: it acts like an alkylating agent. It works by cross linking DNA in several different ways, interfering with cell division by mitosis. The damaged DNA activates DNA repair mechanisms, which in turn activate cell death when repair proves impossible. So there you have it.

Plan C

Dad went into the doctor here in Lincoln for a pre-treatment visit. He had some blood work done and everything looks good...hemoglobin is just a bit down...but not much. Two doctors here in Lincoln and one in Omaha determined that Dad would receive a different chemo treatment starting tomorrow. It is a different "recipe" than the other two. Tomorrow is a long day...about 8 hours. I think 3 or 4 hours is hydrating him because one of the chemicals is rough on the kidneys...so he has to have the extra ivs of fluid and drink lots and lots to flush it out of his system during and after the treatment (Nurse Ratchet also has him hydrating tonight in preparation). He will be given 2 chemicals and an iv steroid tomorrow. Then on Thursday he will be given 1 chemical and the steroid in the morning...lasting about 2 1/2 to 3 hours. Then at 8:00 that night he has to go to the hospital to be given the other half of the chemical in the morning...it has to be given exactly 12 hours later...so hence, 8:00 pm. Again, it will take about 2 1/2 hours...so we won't be getting home til about 10:30 or 11:00 that night. Then on Friday he goes to the oncologist's for an injection of steroids...so less than 1/2 hour. And on Saturday he goes to the hospital for an injection of steroids (since the regular oncology office is closed on Saturday). This will be repeated after 3 weeks...only it will be started on Tuesday so that he won't have to go to the hospital for the final steroid (but will still have to go to the hospital on the evening of the 2nd day).

S0 we'll pack our lunch tomorrow and be there bright and early at 8:00 in the morning. Hopefully this recipe will do the trick! I'll be posting tomorrow to let you know how things are going.

Dad's explanation

Dad said he went outside today and saw his shadow....6 more weeks of chemo.

SLOW AND STEADY WINS THE RACE

So we met with Dad's doctor at the Med Center this afternoon and he determined that Dad needs to go through 2 more rounds of chemo to shrink the mass a bit more. He said that he thought it would be good to use a different recipe of chemicals than what Dad just finished...and since Dad's first chemo treatments did such a good job, his doctor is recommending that he have that recipe again...this time for 2 cycles. So that means his chemo treatments will be 1 day a week, then wait 3 weeks, then 1 day of chemo, then wait 3 weeks, then have another PET/CT scan and assess things then. The doctor was very positive about the entire procedure...it will just be "plan B" and a bit of a delay.

Dad is just fine with this decision and is ok with the delay...he just wants everything to be right before proceeding. So he's in great spirits and ready to start the next batch of chemo. We'll find out when he will have that...most likely one day this week. I'll let you all know. So basically if all goes well with this, then probably the trip to the Med Center will begin the first week of April.

While we were there today, we got to see one of the cooperative care rooms and it seems to be very nice (we had seen one of the hotel rooms there before...and they are very similar, if not exactly alike). So that was good to see that and meet again with the patient coordinator who is very nice.

So after leaving the Med Center, we celebrated by going to a favorite Omaha restaurant...the Bohemian Cafe for dinner. (For those of you other than family: This is a place that Leo and I have been going to for 55+ years...since we were both little kids). Dinner consisted of: a nice cold stein of beer, rye bread, liver dumpling soup (or as Dad calls it..."dirty golf ball soup"), meat, dumpling, sauerkraut, and ended with an apricot kolace....it doesn't get a lot better than that!

I'll keep you all posted as to when Dad will be starting his chemo this week. Stay tuned.

Pet/CT Scan info

I just finally got the phone call from Dad's doctor here in Lincoln and the good news is that the tumor has gotten smaller and he was pleased to see that, but he didn't know if it was small enough to start the stem cell transplant. So he has suggested that we go up to the Med Center on Monday to meet with the doctor up there and he will determine whether it's small enough to start the transplant, or if Dad needs a round or 2 more of chemo first. We were hoping to get a definitive answer today, but we'll just have to wait until we meet with the pro at the Med Center. So nothing more to report at this point. I need to head out now to go to the hospital to pick up a CD of the scans from today and the ones from Dec. 7th to take to the doctor at the Med Center. I'll be posting again on Monday late afternoon after we get back from his appointment.

Blood work today

Dad had is regularly scheduled blood work today and his white blood cells are great (above the normal range), red blood cells are just short of normal, hemoglobin...just short of normal, but his platelets are pretty low. I looked back at round # 1 of chemo (in Jan.) and actually his platelets dropped the second week after chemo (and this one is the second week after round #2) so maybe it's not a big deal. He didn't see the doctor this time, but he did get the go ahead to have both the PET and the CT scans tomorrow morning. If the doctor decides to do something about the platelets, it would be Friday...or tomorrow afternoon. His platelet count is 58.4 (normal range is 150-450).

Added note: the doctor at the Med. Center was wanting Dad to take a sleep apnea test. Apparently they are trying to screen more people for this. It isn't a required test from the insurance company, so Dad determined that it wouldn't make sense to have a test like that now. If he has sleep apnea that is the least of his worries. And it's not like he's going to try to get used to having more freakin' tubes hanging off of his face, looking like elephant man...with a c-pap machine...while going through more chemo and a stem cell transplant. We sent an email stating Dad's feelings on this and the doctor said that it was ok for him not to take the test. Dad wonders if they have any other tests in mind....I won't mention what tests Dad thought might be possibilities! So anyway, Dad stood his ground and said...in the words of an idiot from Alaska..."Thanks, but no thanks."

So onward and upward...tomorrow morning we'll be to the hospital at 7:30 (hopefully no snow storm to accompany us!) for the scans. We should have results by tomorrow afternoon and I will be posting that information on this blog as soon as we hear the results.

Monday, Jan 31 tests & blood work today

Well, Dad was supposed to be to the hospital for 2 more tests on Monday morning at 7:00 AM, but the Nebraska winter weather had other ideas. I can't remember if I previously stated that these 2 tests are routine ones in preparation for the stem cell transplant and are necessary before the insurance company will approve the procedure. One test is a pulmonary test, testing the lungs. The other test is an echocardiogram testing the heart function.

Back to the weather. So Dad and I decided to each drive out to the hospital because I had an appointment at 10:00 that morning to finally get started on physical therapy for a muscle tear or strain in my arm (from stripping the #$&*@# wallpaper in our entryway, living room, dining room last October). So we left the house and soon discovered that the conditions were far from being great. It was a basic sheet of ice with more ice falling and the wind blowing. We managed to get through the neighborhood to the main street. I had just turned heading east and realized I didn't see Dad's vehicle. I gave him a call and he was spinning his wheels trying to get up the street (a Ford pick-up is not the best vehicle to have in Nebraska in the wintertime). He managed to slip and slide and finally got back to our house...it took him 1/2 hour to go 3 blocks to accomplish this. And I started to head back to pick him up in my vehicle which gets around better in the snow...I was about 6 blocks from home at that time and traffic was jammed with both lanes blocked due to a 5 car pile-up in the direction I was going. It was a total sheet of ice so Dad was trying to find an alternate route for me to get back home that didn't involve hills to go up. Long story short...after meandering through unknown neighborhoods, I made it back home 45 minutes later. Meanwhile I had called the hospital and told them about our dilemma and told them how critical it was to have those tests done soon. They said to just come on in and they would fit him in the schedule. I also mentioned to them that having just completed a 3 day round of chemo, his immune system wasn't the best and could they please do what they could to get him out of the admissions waiting room as soon as possible. They said they would and to just get there when we could...definitely take our time with the road conditions....and not to worry.

So Dad got in the car and off I drove. Now keep in mind...the instructions for preparing for both the pulmonary test and the echocardiogram was to not exert yourself and to stay out of the cold. (the wind chill that day was maybe 15 below zero).So the driving to the hospital usually takes about 15 minutes but due to the fact that the roads were horrible and bumper to bumper all the way there...with stalled cars along the way to weave around. It took us 1 1/2 hours to get there....but we made it...and in one piece!

They were very nice at the hospital and had us sit separately from the main waiting room and they rushed us through really quickly...I noticed on Dad's admittance papers they had stamped "RUSH" in red ink multiple times on all the forms. I was very impressed with their help.

So Dad had the pulmonary test administered by a very nice woman. He had to sit in a glass booth (sort of reminded me of some tv game show from the 60's) and blow into a machine. Well, he did fine on that which is no surprise because we all know he's full of hot air....er...just air. Also, factoring into this is that he was a swimmer (many moons ago) ...and had great training (as a family challenge) holding his breath anytime going past a cemetery. The challenge was to see who could hold their breath the entire length of the cemetery (driving in your car at the speed limit). Leo never lost at this game...good thing...it helped him pass this test years later!

The echocardiogram (ultrasound of the heart) was done and as far as we know the results are fine. I'm waiting for a call back from the transplant center in Omaha to get their final take. The results of the test were sent to them and up for their interpretation. Preliminary results sound fine from the nurse here in Lincoln. I'll keep you posted.

Another hour's drive and we were back home and Dad just worked from home that day...it wasn't worth risking life and limb to get there.

Side note...the weather here was again horrible the next day...Tues. (reports of temperature with the wind chill...was anywhere between -25 to -40 degrees below zero) but Dad took off and went to work for the day. Again the roads very icy, but with the addition of snow, too. Dad and Sara did some snow blower snow removal today. Luckily, we have a great neighbor that is helping out with this when Dad and Sara can't.

Wednesday (yesterday) was very icy driving, but again, Dad was at work as usual. After work, Dad was shoveling snow to get the drifts...not too bad. He used the snow blower some and the shovel to get the remaining. Boy, this sounds like the weather channel here!

Today Dad went to the oncologist's for routine blood work and all looks good. All counts are just below normal and to be expected at this stage following the chemo. He will have more routine blood work next Wed. Then next Thursday morning he will have a PET/CT scan and we should know the results by that afternoon.

Dad has been feeling great...eating good, sleeping good, and doing fine.