IT'S A GO !!!!!

Just got the word from the doctor in Omaha at the transplant center that Dad has been given the go ahead to FINALLY start the stem cell procedure! Things will begin on this upcoming Monday and it looks like it will be a full schedule for the week. Dr. Bierman's assistant will be emailing us a full schedule either tomorrow or Friday. The basics are this: Monday Dad will have a bone marrow biopsy, Tuesday he will have an echocardiogram stress test (on the treadmill), Thursday he will get the first Neupogen shot (to get those stem cells out of their cozy little home in the marrow and into the bloodstream) (this is similar to the Neulasta shot), and on Friday Dad will get his other port/catheter put in...that is for the stem cell harvesting part and also the actual transplant. There will be a lot of other things going on during the week, but those are the main events. I will be taking a class as part of my co-operative care caregiver sometime during that week also.

So that's week 1. On Monday of week 2, they will start the stem cell harvesting. I will have plenty of information for all of you then...and I promise some pictures. At the end of that week they will start 6 days of chemo and the day after that is completed is the actual stem cell transplant. It takes around 10 days after the transplant for the blood to BEGIN to recover from everything so that will be another 2 or so weeks of recovery.

Next week and the following week Dad is an outpatient and we will be staying at Laura and John's house. Laura & John, thank you SO MUCH for letting us stay there. That is so nice to know we have a nice, comfy place to stay. After that 2nd week, Dad will be an inpatient and admitted to the hospital for the rest of the time...that's where we will be doing the co-operative care set-up. I will explain more about that later.

For now, we will be celebrating the fact that this is finally happening! Thanks to all of you for your good thoughts and prayers...they are all greatly appreciated!

CT scan results

Dad had his CT scan this morning and the results came back...everything looks fine! So I have a call in to the Omaha doctor to see what the plans are now. I will post later today when I hear...or it may be tomorrow before they get back to me.

Patience is a virtue...or so they say

The doctor at the transplant center in Omaha was pleased with the reduction of SUV (standardized uptake value)...or cell activity of the tumor and was not concerned with the fact that the size had not changed...he said that is fairly common. But being very thorough, he wanted to check out another area that showed some SUV or cell activity in Dad's right shoulder blade. No idea what it is and it could be nothing at all, but he wants it checked out. So Dad is lined up to have a CT scan here in Lincoln tomorrow morning and we should know the results of that by noon or so. Depending on that, the Omaha doctor will make a decision....but this week is out for starting the transplant. Next week is a possibility...and as the doctor said...we're getting closer and he is still hopeful...so that's good to hear. When the process starts, you need to start on a Tuesday or Wednesday in order to have the prelim stuff done so that the stem cell harvesting can begin on a Monday...hence, that's why this week is no longer possible.

So...we should know more tomorrow....maybe. I'll post when we find something out. For now, Dad is doing fine with this information...he realizes that everything needs to be right, and he said that it's probably a good thing to delay a bit because it will give his blood even more time to improve.

Today's scan results

Dad's scans from today showed no change in size, but did show a reduction in heat/activity by more than half, so the doctor was pleased with that...that it was responding. He just doesn't know what the doctor in Omaha will decide...whether to start the transplant process or whether Dad will have to go through another 2 rounds of chemo. We have an appointment tomorrow late afternoon so I guess we will find out then....and no sense in speculating until we hear the decision from the doctor tomorrow. Dad is doing fine with this...he would really like to hear the go ahead...but if he needs more chemo, he's ok with that too. I will post tomorrow after that doctor visit. It will probably be early evening before I can post.

Correction

Dad just read the previous entry last night and found an error. I had reported that his overall hearing was 92%....that is incorrect. That 92% was a test of word recognition when Dad had a headset on and the tester was speaking words directly to him....with no outside sound. This does NOT measure his overall hearing. Dad personally estimates that his overall hearing is about 70% at best. Officially, there is no figure that shows that...only evaluations of high frequency sounds, middle, and low. Just wanted to keep the record straight.

Wed. visit to the ENT doctor (for hearing) & today's blood work

Dad went to the ENT doctor on Wednesday to have his hearing tested to compare to last time (which was 2 or so weeks following the previous chemo). The doctor said that his hearing was further impaired but not as much as before...so he said that maybe the NAC supplement that Dad took did or didn't work...or maybe it helped his hearing from being damaged more. Regardless, Dad's hearing which was previously impaired in the higher level frequencies, now has some medium range damage. They tested his inner ear and this time there was some damage to the hairs in the middle ear that carry sound. When these are damaged, it is permanent. His overall hearing is 92% so it isn't like he's deaf.

Dad has had more trouble hearing lately...the tv has grown louder and I've noticed he misses some things said (of course, some may be selective!). The doctor said that Dad's hearing could be pretty much totally corrected with a hearing aid, so Dad will probably get one after the dust settles. The new hearing aids are very sophisticated so we will be finding more about that later. We sure like this ENT doctor, Dr. Cederberg...he's very smart, personable, and takes time to talk and answer questions. That's who Dad will go to for the hearing aid fitting when the time is right.

Dad says that he has noticed that his hearing is off and that he's missing things at work. He said he was at a meeting the other day and he had to lean into the table and sort of cup his one hand in a tube form and put it by his ear, which helps him hear better. I told him he was turning into Mr. Muckle (sit down, honey!) and Dad mumbled something about a pack of gum and added "You don't expect me to lug that thing home, do you?!" For those of you outside the family (although inside the family of friends!) this is in reference to our family's favorite movie of all time "It's a Gift" with W.C. Fields. We quote it more than any other movie (even the Big Lebowski!).

So today Mr. Muckle...er, Dad...went for blood work and that looks very good. His platelets jumped from 48 to 153...so they tripled!...and they are in the normal column now. Also his white blood cells are normal. His RBC and hemoglobin have increased and are just below normal. His magnesium was a little low, but in normal range..they refrained from giving him any supplements. When I looked up magnesium rich foods a bit ago, here's what I found were high in magnesium....white beans, pinto beans, navy beans, cornmeal...hmmmm...what could I do with that???? I know what's for dinner tomorrow night and I think Dad will be very happy.

On Sunday, Dad is on the restrictive diet for the day before the scans....that means ok to meat, cheese, green beans, broccoli, eggs, and lots of water....and no to anything with sugar, such as fruits juice, cough drops, corn....and no to all carbs and high starch foods.

Then Monday early morning is the PET/CT scan and after that, as Dad says...."the reading of the tea leaves". We have an appointment with his oncologist at 12:45. I will post as soon as we get home from that. So keep all those good thoughts and prayers coming for this event.

Update

Well, I'll start with the good news: Dad had blood work done yesterday and platelets more than doubled, white blood cells way up, hemoglobin and red blood cells up...so that's going well. The bad news is that I have come down with a nasty sinus/head cold/sore throat. This started on Sunday. I cannot imagine where I got this because we have been so careful about germs I would call it verging on paranoia. But I guess we have been hanging around hospitals and doctors offices and I'm sure that doesn't help much. Anyway, I isolated myself to the spare room upstairs and Dad and Sara were on their own.

I called my doctor first thing Monday morning to ask for some antibiotics to get this thing gone before it got worse. I explained the story of needing to keep Dad safe as we may be going up to Omaha next week. Luckily, they got me in to see the doctor and he said usually he wouldn't do this...but these were extreme circumstances (they really don't like to prescribe antibiotics anymore). I told him the only way I'd ask for antibiotics is in an extreme circumstance. So he put me on a broad spectrum antibiotic and gave me a shot of penicillin right in the gulu fedozo (for those of you who are not in the family, that means butt!).

So all was fine until last night and this morning when Dad got a sore throat and stuffy nose. He didn't sleep well...so he stayed home (very smart) from work today. I had him take his temp. today and luckily, no temperature. I called his doctor to see if he wanted to get Dad on antibiotics right away, but he said he didn't want to put him on any unless he was running a fever. Dad slept some during the day and just took it easy. By this evening, his sore throat was almost gone and he was feeling quite a bit better and is planning on going to work tomorrow if he has a good night's sleep.

Tomorrow Dad has a late morning appointment with the hearing doctor because he wanted to give Dad another hearing test and compare it to the one before the last round of chemo. Then on Friday he has some more blood work done. I'll keep you posted on these things.

Sunday report

Good news...Dad's platelets are up to 23...still way below normal, but at least they are increasing...so no transfusion is necessary. All the other numbers are about the same.

Saturday morning blood work

Dad had his blood work drawn this morning and his platelets stayed exactly the same so he didn't need the platelet transfusion. Everything else...hemoglobin, red blood cells...stayed the same. His white blood cells went up into the normal category so the neulasta is working...and Dad knew that was the case since his bones ached yesterday. That shot is amazing ...it starts working one week to the day from the time that it's given....and it really causes those white blood cells to increase quickly. I guess it's almost worth its cost...it's a really small shot...but it packs a punch...and it costs $4,200....yes, you heard right.

So since Dad's platelets remained the same, he has to have more blood work done tomorrow morning at the hospital to check up on things. I'll post tomorrow after we get back. I'm cooking an iron rich dinner tonight for him...meat loaf cooked in a cast iron skillet (extra iron!...really!..it leeches into the food), party potatoes (organic potatoes...high in potassium), raw baby spinach salad...extra high in iron. We'll see if that boosts his hemoglobin tomorrow.

Dad has been eating lots of fresh pineapple. One of the PAs at the oncologist said that it might help boost the platelets, but one of the other PAs said that it's an old wive's tale....hey! that's me!! So I say...if there's a possibility, and if it tastes good...then go for it!

Friday blood work

Dad had his weekly blood work drawn today and everything was below normal, which isn't unusual at this point...the first week after chemo. The white blood cells are down because the neulasta shot hasn't quite kicked in. It seems to be kicking in today as Dad can feel it in his bones...it's not comfortable, but at least he knows it's starting to do its thing.

The one thing that is really low is Dad's platelets...those cells that help with blood clotting or in other words...they keep a person from bleeding. The normal range is 150-450 and Dad's today was 15. The doctor said that if he goes below a 10, he will have to have a platelet transfusion. So Dad has to go to the hospital tomorrow mid-morning to get more blood work to check on things. If his platelets stay the same, he goes back to the hospital on Sunday for more blood work. If the platelets increase, he doesn't need to go to the hospital on Sunday for blood work, but he needs to go to his doctor's office on Monday for blood work. And worse case is if tomorrow his platelets drop to below 10, then he will have to have the transfusion right away. It doesn't take that long, but it's a bit trickier than a regular transfusion. The platelets are stored in a frozen state and they have to be thawed out and immediately transfused into the body.

The interesting thing is that Dad has been feeling better each day. He went back to work on Monday and has worked a full day every day this week. He's eating well. He's been taking walks at noon outside. He's been going on evening walks when possible. So it's odd that his blood is showing up with this...you'd think he'd be really tired, but then he is an anomaly...or as Sara says...a freak of nature.

I will post tomorrow as to what happens after the blood work results are back. We go into the infusion lab at the hospital for the blood work at 10:30 tomorrow morning so it will be early afternoon by the time that I post...at the earliest.

Thursday morning

Dad had his 20 min. drip of steroids this morning. It was a breeze compared to the last 2 days. We came home and Dad slept quite a bit and seems to be a little bit more clear headed (all the chemo treatments make him a bit "foggy" as he puts it). His stomach is better...he hasn't needed to take any anti-nausea pills today. He ate a good lunch and is back to dozing in the recliner. Nothing else new to report today. Tomorrow he has an early morning last dose of steroids and the infamous Neulasta shot to help boost those white blood cells.

Wed. evening

Well, you know how I said before that Dad's oncologist is a take charge person...well, he has taken that to new heights! Yesterday, he was on the phone talking to the hospital to find out what happened the last time (the vaccuum in the chemo bag that took an extra 2 hours to drip) and to make sure that it didn't happen again. I think he reamed out a few people. And then I guess today he was still on the phone to the hospital because the person that he had put to task to find out what happened, hadn't gotten back to him. Dad's doctor came into the chemo room today and told us that he was even trying to reach one of the nurses at home today to find out more..and he wanted the pharmacist at the hospital to get involved. He was upset because he had checked the records of Dad's previous visit and there wasn't anything written about the malfunctioning of the drip bag....so he was still trying to get to the bottom of this.

Well...I got a phone call from some head nurse at the hospital this afternoon, telling us that they had talked to the pharmacist and she would personally see that things go right this time. And...she said that usually you have to be physically present in the hospital before they order up the bag of chemo (it's so expensive that they can't afford to have a "no show") but that we could just give her a call before we left the house and she would have it ordered and ready so we wouldn't have to wait so long. Also...she said that they had a room already reserved for Dad...room 505. I asked if we needed to stop at admissions or at the emergency room (where Dad had to register the last time...at admissions, that is...but if it would have been after 7:00 he would have had to go through the emergency room). The nurse said that he didn't have to do that this time...just come up to the 5th floor (the oncology floor) and go to room 505. I asked if we should stop at the nursing station to tell them we were there and she said "no...just go straight to the room". I called Dad's oncologist's nurse and told her to tell his doctor that things were looking good for tonight and I told her the details of pre-ordering the chemical and reserving the room and his nurse said that NEVER happens! She was amazed and said she would tell Dad's doctor.

So at 7:15 tonight, I called the head nurse on the oncology floor at the hospital as we were leaving home and they got the Ara-C ordered, we arrived at the hospital at 7:30, went straight to the room, and within 5 minutes the head nurse was there. They took Dad's blood pressure and got him hooked up by 7:55 which is absolutely amazing!! And the head nurse had taken it upon herself to call Dad's oncologist's office and got a dose of zofran to give him because I had mentioned that Dad was a bit nauseated around 6:00...so she had that all ready and up from the hospital pharmacy. Dad's doctor is amazing...he really turned things around here!!!

Dad is doing fine. He was a bit nauseated around 6:00 and so he took his alternative anti-nausea pill then (that's when I had called the hospital nurse to make sure that that was ok to have that before his treatment tonight...and it was). That pill did the trick and Dad ate some chicken noodle soup for dinner.

So we should be out of here tonight around 11:00 or so. Dad's in a comfy hospital bed watching tv now and doing fine. I'll post sometime tomorrow morning after his 8:00 chemo treatment. Actually, his treatment tomorrow is only a 15 or 20 min. dose of steroids.

Wednesday morning

We were the first ones here this morning so Dad could get started as soon as possible since today is the split dose. He's now getting the Ara-C....the main drug of the day...other than the steroid. The Ara-C takes about 2 1/2 hours so he should be done around 11:30....then to the hospital for the other half tonight.

Dad is doing fine today. Last evening he had a bit of an upset stomach, but took his anti-nausea pill and was fine. He ate dinner and just relaxed after that and got a fairly good night's sleep, considering he's on high doses of steroids. I went to bed before 9:30 which is a rare occurrence and so I'm fairly rested today for the late night. Dad has had the steroid face flush today where his face gets red and he feels warm. I think I'm going to rig up some sort of "subtle" ice pack for his neck and head when we get home to help counter that flush and it wouldn't hurt for the cold to help ward off any inkling of going after those hearing nerves.

Dad is dozing now (even though he didn't get benadryl today) and I'll have him take a nap this afternoon to stay on top of things for the late night tonight. The Ara-C got started this morning around 8:45 so it won't be able to be started until the same time this evening (supposed to be 12 hours apart) so that means we won't be home til after midnight tonight....so naps are in order this afternoon.

Good news...I saw the first robin of the year outside our kitchen window at home this morning...so spring is on the way!

Tuesday afternoon update

Dad is almost done for the day...about one more hour or so. He's just getting some saline now to flush out his system. Between all the drip bags today and the (almost) half gallon of water that he's been drinking...I think his teeth are pretty close to the float stage. He's doing really good overall. We've been watching a lot of ducks fly by (outside the window) today and Dad thinks it's their way of telling Dad that he's "ducky". (I can hear all those moans and groans from you all right now!). We should be out of here by 5:15 or so.

Round 2 chemo underway

Dad is all hooked up and has had his port accessed (the needle put in) and has had his pre-meds...anti-nausea, steroids, and benadryl....and so he is now off in benadryl-land (better known as lala land) so he will be asleep for about 3 to 4 hours. He's doing fine this morning.

Today he has 2 main drugs given, but it takes all day because one is hard on the kidneys and they have to give 4 bags of saline to super hydrate him before the chemo drip is started. So we're here for the whole day. One of the drugs today is the platinum analog that I described on Feb. 16 and the other today is Rituxan. Again...this technical information is mostly for Shanna, but the rest of you might find it interesting. The Rituxan is a monoclonal antibody. Part of your body's natural defenses against germs/bacteria, are antibodies. The antibody recognizes bacteria, attaches to them, and helps the immune system destroy them. Antibodies can be made in a laboratory and designed to bind to a specific target, such as cancer cells. These are called monoclonal antibodies. In non-Hodgkin's lymphoma, Rituxan works by attacking B-cells. All B-cells have a marker on their surface called CD-20. Rituxan binds to CD-20 and kills it. So there's the scientific version of what's going on today! Being very non-scientific myself, I find it amazing that somebody figured all of that out!

I was going to bring the camera today to take a picture of the view out the window here, but it didn't snow last night and the snow from yesterday is all gone. Right now there are 2 bluejays and one cardinal outside the window. We're supposed to be getting some snow tonight, so we may have to get up pretty early to get here tomorrow if the roads are bad...but we'll cross that bridge when we get there.

I'll post later today to let you know how Dad's doing.

Monday doctor visit

We just got back from Dad's oncology doctor visit and everything is a "go" for chemo treatment this week. Since Dad's hearing is ok (other than the slight "cricket chirping" noise in his ears), the doctor (with Dad's approval) said to continue with this particular chemo recipe. Dad's blood work was really good today...his platelets are way up...which is really good. So the plan for this week is this:

tomorrow (Tues): chemo from 8:00 til probably around 6:00

Wed. chemo 8:00-12:00 and then again 8:00 PM to midnight

Thurs. steroid drip 8:00 for about 45 min

Fri: steroid drip 8:00 and Neulasta shot

We asked about what we should do if the same thing happens at the hospital on Wed. night as the last time...when the bag of chemo had a vacuum seal in it and it took an extra 2 hours to finish the bag...and we didn't get out of there til around 1:30 AM or so. So Dad's doctor today as we were in the office with him, picked up the phone and talked to a nurse on the oncology floor at St. E's so hopefully that won't be a problem this time. We really like how this doctor is a "take charge" type of person...he does NOT mess around!

A scary note: when the doctor started to write up the orders for this weeks treatment, the one chemical that Dad gets on Wed...where he gets one dose in the morning and the other in the afternoon...there is a shortage of that chemical (across the country). The doctor said that there are now critical shortages of certain chemo drugs (the Ara-C (Wed. drug) being one, and another one is for colon cancer treatment. I guess the shortage is a result of cutting back on Medicaid (or did he say Medicare??) and the fact that the profitability is down so far that some plants have closed down. Also some manufacturing plants have been closed by the FDA because of some possible lower quality output...but here's the kicker...now they are looking into getting some of these chemicals made in India or China...which is a no-brainer to figure out that that would be way worse in quality.

So as we sat in the doctor's office today, he sent his nurse out of the room to check to see if they even had the drug for Dad on Wednesday. She came back in and thankfully they had just received a shipment on Friday. We continue to be filled with gratitude for the small...and not so small things.

After this week of chemo, then Dad is off for several weeks and scheduled for a PET/CT scan on Monday, March 28 (Delia's birthday!) and then an office visit again with the Omaha doctor on the following Wednesday, March 30.

Right now there is a gentle snow falling....no wind. It looks like a scene out of an old fashioned snow globe that you shake and watch the snowflakes fall. We aren't supposed to get that much snow accumulation tonight.

I will be posting tomorrow while Dad is getting his chemo treatment...it's a long day, so any comments are welcome as Dad loves to hear them/read them...it helps the time pass by a bit quicker.

Ear Nose Throat doctor visit

Dad's oncologist was able to get him an appointment with an ear, nose, throat doctor yesterday which was a major accomplishment. As we sat in the waiting room, we heard the gal answering the ENT office phone, tell several people that the first opening they had was in April...so it definitely helps for a doctor to call.

We thought that this doctor visit would be maybe an hour...but it was more like 4 hours. First they had to give Dad a hearing test that was quite lengthy. Then we waited for the doctor and visited with him. He said that Dad's overall hearing is within the normal range, but high frequencies are not very good....he has some hearing loss there. The thing is...we don't know if that's something new or if that's just damage from being around screaming jet engines for 4 years in the Navy and for plenty more at Duncan. The doctor then decided to do further testing to see if there was any damage to the little hairs in the inner ear that convert sound waves into nerve impulses which then goes to the brain and tells you what you are hearing. The reason for the test is that the hairs can show damage before it actually shows up as hearing loss...so the doctor wanted to be sure that there wasn't more going on.

So Dad took that test and somehow blew up the testing machine a time or two and it took almost an hour before they got it back in order and got 2 tests to be similar. Then we had to wait again to see the doctor. Bottom line is that there is no visible damage to the hairs so the doctor felt that it was fine to go ahead with the same chemo and then follow up a week afterwards with another hearing test since they now have a baseline test to go from. He also recommended a supplement that may help prevent further damage caused by chemo. The ENT doctor called Dad's oncologist to report his findings and give his recommendation and to get the ok on taking the supplement. I've been really impressed how the doctors actually talk to confer on things...instead of just relying on paperwork passed from office to office.

Overall, we felt pretty good about the tests and will find out Dad's oncologist's take on it on Monday before starting the chemo on Tuesday.

Interesting side note...the ENT doctor and his father were in the parent-child program that Dad and all you kids were in. The dad and his sons were the big competition at the derby car races...he was an engineer...so the final races were usually between the Cederberg's and the mechanics at Duncan. I remember the ENT doctor as a kid racing those cars...who would have thought Dad would be seeing him as a doctor years later!

Also, while we were at the doctor's, which was at Bryan hospital, we saw our next door neighbor who we knew would be there that day. Her husband was having some 8 or 9 hour heart surgery. We saw her passing by and spoke with her...what are the chances of seeing your neighbor at a hospital...just happening to cross paths!

Another note...the weather has taken a turn for the better and we have again started taking walks around the neighborhood. It was beautiful today!

I will be posting again on Monday after the visit to the oncologist.

Tuesday doctor visit

Dad went to his regularly scheduled doctor visit and blood work today. His blood work looks good...white blood cells up and the rest a bit lower, but to be expected. At least that neulasta shot worked, boosting up those white blood cells. Dad's hearing is mostly back to normal, but still has a bit of ringing. His doctor today looked in his ears and said the membrane in his ear that is normally shiny, looks dull...so he called to see if he can get Dad in to an ENT (ear, nose, throat) doctor this week...just to have it checked out. Then Dad goes back on Monday to see his oncology doctor and he will determine then whether to keep the same recipe for the next round of chemo, or change it up a bit due to the ear problem. Either way, Dad will go through round 2 of chemo on Tuesday, Wed, Thurs, Fri of next week. As of now, it will be the same schedule as 3 weeks ago: Tuesday...about 8 hours, Wed...about 3 hours in the morning and 3 hours at night, Thurs...about 1/2 hour, and Friday...about 1/2 hr - 1 hr.

Other than that, Dad is feeling fine...going to work every day. We're still in our hunkered down mode...staying away from crowds, not eating out at all, just trying to stay healthy! We started a winter walking program, but that lasted all of one day before we got another blast of snow. The neighborhood sidewalks are now clear of any snow so we're planning on starting again tomorrow. I'll post again after next Monday's doctor visit.