Tuesday - About the same

Ace is not sleeping well, but is not really sick.  He feels fatigued, but still functioning, just not as fast as he used to.  He has a good attitude and is eating normally.  He is breathing ok. His voice is still very "raspy."

The usual Chemo effects have set in.

Ace is suffering the usual effects of chemotherapy.  He is fatigued.  He has aches and is uncomfortable.  He had chills in the night, but seems to be fine this morning.  He is sleeping a lot more than he normally does, but I'm sure it's because of the coming down off prednisone, which the doctor predicted.  He doesn't feel like doing anything, but I'm going to insist he walk a bit which will help him to keep up his strength while he is going through chemo.

Ace doing ok.

Had an appointment at Methodist Cancer Center to have blood drawn.  His white blood cell count was a smidgen low.  The doctor considered giving him a shot to boost the white cells, but decided against it.  He just had one and thought perhaps it had not kicked in yet.  We go back next Friday to test again.  The only side effects he is feeling today is the tingling fingers and fatigue. An advocate at the Center talked to us to see if we need anything.  Apparently the Center offers counseling and other services to cancer patients and their families for free.  There are support groups available, but we didn't feel it was necessary.  Our support group is our family and our church family and friends.  The Cancer Center offers a free hair-cutting service when Ace loses his hair.  I'm so impressed with the facility and the professionals that are there to help us.  Ace and I both feel we are in the right place and have the right doctor. 


We had  to cancel our travel plans to California today.  The doctor does not want us to fly when Ace is receiving chemo and advised us to have all family members have a flu shot.  The chemo attacks the immune system and the doctor does not want Ace to catch a cold.  We will reschedule our trip in January.

Ace had a good night

Ace is doing okay.  He hasn't been nauseas. He only complains that food tastes bad.  He is doing really good so far.

Tuesday - It's all good

Ace got the results of his bone marrow biopsy. No cancer detected in his bone marrow.  We had no appointments today and Ace felt just fine throughout the day.  His voice has not returned to normal yet, but his breathing has improved tremendously and the cough is gone.  The doctor said he would improve quickly and that has happened. Today is the last day the 100 mg of prednisone.  He will start to take prednisone every time he takes chemo in 5-day increments, 100mg a day.  In a word, he is doing good.

Monday

Only one appointment today. Ace is getting a "push.."  Apparently, he will be getting a "push" in his port. I can't remember what for or what it is.  I just know we go every Monday for a "push."  Maybe one of my nurse granddaughters will know what a "push" is.  We will take Brian A to lunch today and to doctor's appointment and then on to the airport. I will miss Brian. He has been doing the driving and it has been nice to have him here. 


Now we will have only one doctor's appointment a week and chemo every 3 weeks for Ace and every two weeks for Darby. 


Ace had a good night and is breathing okay. His cough has subsided and he is not experiencing any of the chemo effects that have been predicted for him yet.

Tingling Feet and Hands

The tingling of the feet and hands has begun.  We've been through this with Darby so we know what to do.  He's a bit hyper from the large dose of prednisone and had trouble sleeping last night, but he is not suffering from being nauseas or pain.  Brian A is doing all the driving which I truly appreciate.  Ace is not supposed to drive while on prednisone, and I'm sure I'll have to argue with him over driving when Brian goes home. His coughing has already been reduced. 

All went well

Yesterday was a good day.  Ace had no adverse reactions to the chemotherapy.  It was a very long day since we were there from 8:00 in the morning until 5:00 P.M, but having Brian Acebedo with us helped to pass the time faster.  The first chemo treatments are always a bit scary.  We got the results back from the PET Scan. The cancer is confined to his neck area. It is not in his lungs or any other organ.  Dr. Tarontolo again said Ace would be breathing good very soon and would get his normal voice back as well.  We got a schedule for his chemo treatments.  The last one will be January 2nd, 2015.  He may not have to have radiation if the cancer is gone.  It's all good news.

Chemo Day

Today is the beginning of 4 months of chemo.  Ace has a great spirit and is going into it with determination to not let it knock him down.  It will knock him down, but he will get up again every time.  He started taking 100 mg of prednisone last night.  That's a really high dose and if he has to take it for 5 days.  He will get puffy and retain water and will be hyper and maybe cranky. I remember when I took 40 mg and it makes one feel weird.  We shall see.


Friday Evening:
It was a long day today. We arrived at Cancer Center at 8:00 AM and left at 5:00 PM.  Apparently, they gave him a slow drip of several kinds of chemo.  I think there were 5 bags of different kinds of chemo administered to him through his port.  He had no ill effects.

Bone Marrow Biopsy & Insert Port

Probably won't find time today to write any more in blog.  The hospital called and told us Ace will probably be in the hospital until 4 or 5 PM.  I know these are simple surgeries, but I'm just a bit frightened because Ace has labored breathing.  I have faith in Dr. Mortenson at Mercy Hospital who is doing the surgery.


Ace had the Port implanted and the bone marrow biopsy.  All went very well.  He did not have to have a breathing tube inserted.  We were home by 2:30 instead of 4 or 5 which they had predicted.  He is resting now, but said when he feels rested, he wants to go to get a steak at Texas Roadhouse.  He's been fasting twice this week and he is hungry.  The Mercy Hospital Staff were wonderful.

PET Scan done

Today Ace had a PET Scan.  He had to stop the prednisone treatment so he coughed a lot and went back to labored breathing.  Tomorrow he has a bone marrow biopsy, electrocardiogram and insertion of port.  He will be under anesthetic and we are told his recovery time will be two hours.  His appointment is at 8AM and dismissal time from hospital will be around 4 or 5. Another long day.


 Darby has chemo tomorrow, so I will take Darby in the morning while Ace is having cardiogram.  Brian A will take Ace.  Brian D will come over to take Darby home with infusion apparatus attached and I will go back to bring Ace home.  I'm so grateful that Brian A is here from California for Ace's first chemo treatment. I'm also grateful for Brian D to tag team with me to take Darby.  We had hoped Darby would have a CT Scan tomorrow to let us know what progress he has made, but the chart shows we have to wait until October 2nd to have a scan.  We are so sure he has improved, but it would be so nice to have it verified by a CT scan.


Since we can't leave Darby alone while he is hooked up to infusion fanny pack, Friday while Ace is taking chemo and I feel I must be with Ace for first chemo treatment, Darby will probably stay at Brian's house or Brian will stay with him at Darby's house.  It's all a bit complicated this week, but Ace's chemo is every 3 weeks and Darby's is every  2 weeks, so this should not happen very often.  Again, I'm so grateful that Brian is here to be with his father this week.

Brian Acebedo came in from California

Picked up Brian at the airport at 5:30.  We are so excited that he is here.  Ace had a decent day. The prednisone is helping him, but he still coughs and his voice is very raspy.  The doctor has assured us that a very short time after he takes the first chemo treatment, he will breath better and cough less.  Friday chemo starts and we are anxious for the recovery to begin.

Dr. Tarontola 9:30 AM - Great News

The official diagnosis is Non-Hodgins Lymphoma. Dr. Tarantola advised that it is curable and that after one chemo treatment, his breathing will improve dramatically.  He will have to take chemo for 4 months and radiation after that which will take us up to the end of the year. His treatment will be for 6 hours every three weeks in West Omaha.


Ace will get a PET scan this Wednesday at 7:30 AM and will be required to refrain from eating carbs or sweets.  They gave him a list of the things he could eat.  He can eat steak, fish, chicken, vegetables and eggs.  He loves all those things.  The flipside of this is that he cannot have his daily coke.
He will have a Echocardiogram, a Bone Marrow Biopsy, and Port Placement 9/18/14 at 8:00 AM.

The Port Placement will be by Dr. Mortensen, and they were able to coordinate his Bone Marrow Biopsy done at the same time.

He has an appoint with Dr. Tarantolo to start of chemotherapy 9/19/14 9:00am which will take 7 hours on Friday.

We are so grateful for all the support by family and friends.  Thank you to everyone.  We are especially grateful for the prayers and blessings that Ace has received.

 

Sunday

Ace slept some last night. He had to sleep in the recliner again.  We can't wait until he gets to the Doctor tomorrow. Hopefully he will be able to provide something to help him with his cough.  The prednisone helps, but not enough. 


Ace talked to his mom and his sister today in California and was able to joke and make them feel better.  Brian is coming out this week from California and that will be such a blessing. Brian Deeds will go with us to the doctor in the morning to be a third ear in case we miss something.  He listens very carefully and hopefully he will remember something that Ace and I might not remember.

Saturday

Dr. Tarantola prescribed 80 mg prednisone yesterday.  After Ace took first dose, I could tell the difference by 10 pm last night.  He was breathing better.  He slept from 11 pm to 6 pm without waking up and he slept in the bed propped up on pillows instead of the recliner. Waiting for treatment is terrible for both of us.

Friday-finally diagnosis and treatment

The diagnosis is lymphoma carcinoma.  We had appointment with Dr. Coughlin today. His PA met us at the door and said there was no need for us to be there. Dr. Coughlin looked at all Ace's records and found that the kind and scope of lymphoma Ace has should be treated with chemo, not surgery.  Since Dr. Coughlin is a surgeon, he referred us to another Doctor who is lymphoma specialist. We have appointment 9:30 Monday Morning with Dr. Tarantolo.  In the meantime Dr. Coughlin called the new doctor and had him prescribe steroids to take the swelling down. Perhaps the steroids will help him sleep, even though he is not to lay flat.  He's been sleeping in a recliner.   I have a call in to Dr. Whalen to request oxygen, since that really helped Ace when he had his episode in Des Moines and the episode he had here 2 days ago. We were hoping for surgery, it didn't happen.


Ace has a good attitude. He made jokes on the way home saying, maybe he and Darby can get group rates and they can compare "ports"  Brian Acebedo suggested they install a USB Port at well. He also said he wanted better looking nurses than Darby. 

Got Doctor's appointment 1PM tomorrow with oncology surgeon

Hospital called with results of biopsy.  Ace has lymphoma.  We will find out what the treatment is tomorrow when we go to the Oncology Surgeon, Dr. Coughlin at the Esterbrook Center.  We sincerely solicit prayers in his behalf.   

Another day of waiting

Ace had a rough night.  He started to go into the same kind of episode he had in Des Moines and yesterday.  He got up and moved and changed his position.  Maybe the windpipe was pinched, but he was able to avert passing out.  I called Dr. Whalen and told him Ace was on the verge of blacking out again and he said take him to emergency again and perhaps we should put him in hospital for observation.  I told him we needed to move up the appointment with Dr. Coughlin to tomorrow if possible.  He is going to call Dr. Gott who made the arrangements for Monday and Dr. Gott would call Dr. Coughlin's office and see what we can do quicker than Monday.  I think it's going to be very long weekend if they don't do something.


Dr. Whalen called back and said if Ace  shows signs of passing out, take him directly to the Med Center Emergency.  That's 30 minutes away.  Dr. Gott is out of his office today so there will be no help there.  I called Dr. Coughlin's office and left message.  Doctors offices do not answer phones anymore. I left message for a PA to return call.  My guess is that I will not even get a call back.  I'm not sure what step to take next.  If I have to take him to the Med Center Emergency, I'm going to insist that they keep him for observation.  Dr. Whalen said they might do that.

Diagnosis

Ace has been feeling ill for a little over a month now. He had trouble swallowing and had a shortness of breath.  When he was taken to emergency while we were in Des Moines, they treated for reflux which I didn't think was right.  His pain seemed to be too severe to be reflux, but Dr. Whalen continued the treatment when we got home. Nothing worked.  His health has deteriorated continuously since then.


Yesterday, I finally called and got Ace in on same day I called and went with him to make sure Ace told them how sick he really is.  He has been sleeping in a recliner because of the severe cough that he has when he lays down. 


Dr. Whalen finally ordered a CT Scan and sent us over immediately for a scan.  We carried the scan to Dr. Gott.  Dr. Gott told us Ace has a large mass that is pressing against his vocal cord and his wind pipe.  One vocal cord is not vibrating. He said cancer was a possibility and that he needs to see an Oncology Surgeon in Omaha that does throat surgery exclusively and is an expert on these kinds of problems. Dr. Gott said the surgery was beyond his expertise.


Today, we are going to have another sonogram with directed emphasis, whatever that is.  The simple explanation that I got was that they are going to put a needle in the mass and pull out a sample to biopsy.  Our appointment is at 11:30 AM.  They told us it takes 48 to 72 hours to get the results, and that would take us to the weekend, therefore, we have an appointment with the Oncology Doctor on Monday.


Addendum:  Had to take Ace to Emergency this morning. He acted the exact way he acted in Des Moines.  After they gave him oxygen, he quickly rallied.  They were able to perform biopsy. They pulled out 5 samples to biopsy.  We stopped at Noodles & Company and had lunch. He was able to eat and he is now napping.  We have appointment 9AM Monday with Dr. Coughlin at the Esterbrook Cancer Center in Omaha.  It's going to be a long weekend.  Our neighbor brought over a bell for Ace to ring when he needs me.  His comment was "I am not ringing any bell."  He's just a bit stubborn.