2009-05-28-Thursday morning

It's 3:30 AM and we finally have Ed down and trying to rest.After we went to bed he tossed and turned for an hour and needed more pain pills.He was having a very hard time resting in the bed so I got up and made his lounger up for his bed.The nurse did explain he would become so weak he would want stay in bed so I figured if he wanted in his chair he can. Amiee and Joe were still up so we watched a few funny videos on U Tube and he finally relaxed enough to fall asleep.I am just watching him and am afraid to fall asleep.His feet are swollen and he is running a low grade fever.

2009-05-27-Wedsnday

This has been the hard day on all of us.Ed had a really bad night and needed to take more pain meds and was very restless and could not get comfortable.When he got up this morning I knew he was having a hard time controlling the pain now. First thing this morning while we on the porch the attorney called and said he had papers ready for us to sign,and they will be here later this afternoon.His appetite is not good at all and all he really wants is milk and an apple turnover,but after a few bites he fills full and that puts pressure on his spleen and he hurts.
I called the hospice office and we are waiting for a nurse to come and draw blood for lab.
The Hospice Pastor came for a visit and while we were talking Ed started gasping for breath and he was bleeding thru his nose. The pain was so bad he was crying and I got his meds and called Hospice.I rubbed his back and talked to him and the pastor prayed for us.Hospice arrived and he was calming down but was still very upset and needed more pain meds.He is now taking 2 pain pills every 4 hours,instead of 1 pill every 4 to 6 hours.The nurse brought bed pads and towels for his bed.He came out of the spell tired and scared and cried that he was trying to be here for family members who are arriving over the next few days.He made a comment to the nurse that he wanted to be here for our anniversary and said he wished he was strong enough for one last lobster dinner. The nurse explained the steps we would now start seeing and was sure Ed was not going to be with us much longer.She said they decided that drawing blood at this time was not a good idea and explained to me that since he had a bad reaction to the platelets in the hospital he would probably reject and transfusion now so they would not recommend any more.It would be too hard on his body.
We decided we wanted fried chicken for supper and Ed said he throught he would even like a piece so Amiee,Joe and Colton run down to get us a bucket.They came back and they had gone over to Red Lobster and got Ed his wish of lobster.And he ate the whole thing with applesauce for dessert.He even stayed up and watched boxing and then took his pain pills and went to bed.

2009-05-26-Tuesday

Last night was not too bad but he was restless and tossed a lot.He did wake up and take pain medication and it helped him to sleep a little better.He is starting to look shallow and weak and he does sleep alot more.He still has a hard time taking the pain meds as he is afraid of becoming addicted.Amiee,Joe and Colton arrive early and he is glad to have them here.All he talk about is how he wants to be here so we can celebrate our 25 year anniversary. Hospice came out and changed his air tank and I called hospice about what we are supposed to do about his blood work.They will call me as soon as they hear from Dr Anderson. The pastor came to visit and they talked a while and he feels better about his advancement into a new world.
Joe and Popi want my spaghetti for supper so he has a really nice supper.He needs more pain meds and off to bed he goes.

2009-05-25

When Ed woke up @ 5am this morning, He was in sever pain.I gave him his pain meds and they hardly even touched the problem so I gave him more {under direction of dr}, he napped restlessly and when he finally woke up we went to hospital for labs.I guess Dr Anderson forgot to leave orders to draw today so Diane is going to call in the morning and get everything set up.BUT,,she sat Ed down and told him he looked like "hell" and talked to him about the pain and wanted him to go the ER and of course he refused. Then we started talking about the hospice care and Diane did more explaining to him about what and how they work.I guess he was ready to listen because the hospice nurse will be here about 3 today to sign him up.He has a great concern about giving up his Revlimid, thinking it is giving up trying to live and committing suicide, so I stopped at the Lutheran church on the way home and ask the Pastor to visit as soon as possible.
Our Hospice nurse Cay is one of the best things that has happened to us both.When she arrived Ed had been in bed asleep for almost 2 hours.The pain is out of control. i got all the papers signed and then she went in to check on Ed and we had to wake him up to get his vitals.He was in such pain he laid in her lap with water in his eyes.She said she was here to help him and the first thing she did was give him new pain medication. After about 15 minutes we could see the change in him.After 30 minutes he was being Ed again and we were laughing and he was talking our ears off.HE is now under 24 /7 care and can not and will not be left alone.I feel he will now be more comfortable and I feel he will be more pleasant and be able to cope.

http://www.hospiceofsouthtexas.org/

2009-05-24-Saturday night

After we got home Ed had a long nap and we went over to Mikes for a nice family BBQ.But by the end of the evening he was beginning to have pain again so we came home and I gave him his pain pills and he slept but with some discomfort. He awoke Sunday morning with ALOT of discomfort and took pain pills all day.He slept most of the day.His appetite is not getting.Tomorrow is lab day and since we are now seeing Dr Anderson,we go to the 6th floor north for blood draw and Procrit shot.

2009-05-24-Saturday

One of our favorite nurses {Betty from transfusion unit} came by and saw Ed was here so naturally she came in for a visit.She noticed he was looking a little dehydrated so she took over and got him hooked up to a new bag. Now we are waiting for Dr Anderson to come in and let us know if we can go home today.But he is also in a very agitated mood.He wants to get out and he wants a cigarette.I left the room for a break and he conned a nurse into taking him outside to smoke.
When Dr Anderson got there he said we could be released and we are now going to have our lab work done at hospital on Mondays and Thursday.Since his RBC is so low I ask why he was not going to get "pac cells".Thats what Dr Q ordered when they were low before.Dr Anderson explained he didn't want to do that as if it is done too often, it gets too hard to match his for whole blood transfusions.We will wait but not let his HBG get below 8. So we have monday lab and the possibility of transfusion is going to be high.And he is not going to let his Platelets get below 20.And he is putting Ed on pain meds full time.

2009-05-22-Thursday & Friday-23rd

Ed had a good day and even had a good supper. He walked over to visit Quitman. But when he came home he said his left side was bothering him. As he sat for a while it started to hurt to the point he wanted a pain pill.After about an hour he was ned another pill so I gave him half of one and he slept most all the night in comfort.

FRIDAY-23

when he woke it was not good.He woke me up almost screaming at me.His side was huring so bad and he was telling me not to leave him.I finally got a pain pill in him and we just sat on the side of the bed and waited.When he felt a little better I wanted him to go to the ER but he said since it was Lab day we would just wait and go in then. He did not want to eat because when he put anything on his stomach it put pressure on his spleen.After an hour or so he wanted another pain pill and then he slept for about 2 hours.I went ahead and prepared everything for a hospital saty and talked him into going to the ER so he could "his oil change" IF NEEDED,and be in and out of the hospital when Amiee and the boys got here Tuesday afternoon.This was incentive enough for him to go. His counts were:::

PLT / 21----HGB / 8.6----RBC / 2.77
his weight 143

We are admitted to receive 2 tranfusions of platlets.We still have no appeite and have pain in the spleen area.We are given Loratab 7.5,Benedril and excedrin and went right off to sleep.He received his first platelet,no problem.Second one and he woke up with welts and itching all over his back.So he was given more Benedril and another Loratab and off to sleep again.It took a couple of hours for the welts to go away but the itching stopped quickly.He slept thru the night so hard the nurses and I were having a hard time getting his STATS.His blood pressure was really low so they took it every 30 minutes.It was a bad night for me helping them but it was a good night for him...

2009-05-19-Tuesday

It was not a good night for Ed.He had some night sweats,coughing and a lot of restlessness and his right elbow is giving him fits. So we did some walking the floor.This is Lab Day but we also have an appointment with our family physician,Dr. Kevin Anderson.Today he is signing his DNR.This was hard on both of us.but we know it needs to be done.His lungs are wheezy but it is not a cold or congestion.So he was given Sudifed for allergies.We talked to Dr. Anderson about taking over our weekly follow-up and lab work.Since Dr Q said he can't do anything else for Ed we decided to change over and go ahead and go back to MD Anderson once a month and see Dr. Anderson once a month. He did lose a wing stitch on his PICC line and that needs to be replaced,so Kevin wrote an order to get that done when we go get the Procrit shot.
We go over to Dr.Qadri's office for lab and his counts are:

PLT / 33
HGB / 9.3
RBC / 3-14

This is very good.And his weight is 146 and holding.We were going to go to get our shot but he is so tired and ask to come home .After I gave him his meds he went to bed and sleot for 4 hours.His appetite is not very good but he is eating smaller meals and more often.

2009-05-15-Friday

BreAnne and I take Ed for his lab work and are so happy with his results.

PLT / 37
HGB / 9.4
RBC / 3.22

and he is in a good mood and his appetite is up.

He is the hit of the waiting room and being as Ed usually is happy and silly......and always finding a girl to talk too...

2009-05-12-Tuesday

Ed had a bad night and has an upset stomach,some sweats, no appetite is feeling weak and slept almost 12 hours last night.So Andrea,BreAnne and I take off to go to get Lab work done,knowing that we could find some bad counts.


Well sure enough we got good and bad news.His weight is at 145 and his counts are:
PLT / 37
HGB / 8.7
but his RBC is down to 2.95 and that is the reason he isn't doing so well. We see the doctor and he tells us, he can't do anything else for Ed here in Victoria, and talks Ed into going to San Antonio to see Dr.Lyons again and makes us an appt for Thursday May 21st at 12:20pm.And says he needs a T Cell transfusion today.So off to the hospital to get blood and our weekly Procrit shot.

But I am still very concerned about insurance and the fact we could be dropped by MD Anderson doctors if we try any expermental procedures not approved by FDA.And we have appointments in Houston in June so I will call and ask more questions. but the nurses are helpful and have answered some of my questions.But most of all I am thankful Andrea and Bre are there to help me thru these tough decisions...

2009-05-09-Saturday

Just a Quite Saturday morning on the porch

2009-05-08-Friday

Well still good news.
PLY/ 33
RBC / 3.04
WBC / 6
AND last but not least---HGB / 9
We are very happy but we also understand at any time the bottom could fall out and probably will soon, but for today he is weak but feeling good.His feet swelling is down and that's also good

2009-05-05 Tuesday

Fridays counts-05-01--- WBC/ 4.8---RBC/3.13---PLT/22
For Ed this is a good reading,but we need to watch his Platelets closer from now on.They don't want them to get below 20.

Today's counts--- WBC/6.1---RBC/3.42---PLT/25
These are very good readings BUT--his feet are swelling and are very blue.So the doctor put him on LASCIKS and POTASSIUM for 5 days.He really doesn't eat a lot of salt but I am going to cut that down even farther.

2009-05-02

OK That is the reason I did not want to write that last blog.But anyone who know Ed will know that whatever he wants he usually gets.He wanted me to write that blog and he saw it.Now I have to explain to everyone that::

HE IS NOT GOING TO GIVE UP FOR A WHILE!!!!

he is letting everyone know his plans for the coming future.The Dr said we are at a point and things are not going to get better.The transfusions and the platelets are going to become closer together,,and he gets so weak and tired right after,and by the time he starts to feel better he needs another transfusion.He is not in any pain and will probably will never really have any.

(And he said that anyone who wants to visit or call had better do it within the next couple of months.) should plan before school resumes in the fall and before he is so weak and tired that the visits will not be productive.He does NOT want anyone to remember him as a sick person but as the fun loving and active man he has always been.

And he has seen this and approved it to publish

2009-04-29-Wedsneday

This is going to be the hardest AND most difficult note me to write,but I am respecting Ed's wishes and doing it.

After Dr.Qadri leaves the room Ed starts talking to me about going to San Antonio,more Dr's,more tests and whatever...He said he DID NOT want to be a guinea pig unless there was a chance we would see some improvement and he wants to know more about the Dr's there. And he was hungry.So I go down the hall and see his primary Dr.and ask him to please talk to Ed before we leave the hospital.he came by and I don't know everything they talked about but I do know He told us Ed was being kept alive right now with these transfusions.And his chances in San Antonio were probably only about 10% we could find improvement before his passing.They talked awhile and Ed said all he wanted was to go home and sit on the porch and smoke cigarettes until his demise.Ed ask if he did that long did they think he would have.Of course as long as he is on Chemo [which doesn't seem to be working] and transfusions that's a question He could not answer,but he could tell him things WILL NOT GET BETTER.He will keep losing weight,the transfusions will be coming closer together and he will become weaker. Ed even ask if he would have any pain and the Dr said he would have very little.Ed ask how long he would have after he stopped his meds and transfusions, and he said he did not know but at some point within a couple of weeks his heart would stop beating. Another thing that could happen would be a vessel in his brain would burst and he would go instantly or, the worst, his spleen would get a bleed and within a matter he would internally bleed to death with minutes.
When he left Ed said lets go home and we will talk.
He didn't say much on the way home.And when we got here we talked for a long time.

He has made the decision he will keep up with the Chemo and when needed the transfusions and Platelets.He wants to get all his papers in order and make a will.He has decided that when he becomes so tired and weak he will cease ALL forms of treatment,and sit on his porch,smoke cigarettes and "die with dignity".
And he said that anyone who wants to visit or call had better do it within the next couple of months.
He saw this blog and he is the one who approved it.
I will not divulge my thoughts on this or make any comments, as I have lived with this man for 25 years and I love and respect him.And I intend to do as he wishes.All I can ask is that everyone do the same.

2009-04-29-Wedsneday

When I got back from the train and to the hospital,I found out Ed had a really bad night.About midnight he woke up and said he didn't feel good.They took his blood count and found his HGB had dropped a point to 6.So they had to prepare him for another transfusion.He was tired and very weak and was not in a good mood to say the least.He had not eaten in almost 24 hours and that was not good either.I ask if they ever got a weight on him when he brought up and they said it was 144.It's hard enough to keep the weight on him, let alone gain any.He had a CAT scan of his chest and abdomin and they found his Spleen has enlarged again and is now full of small tumors.So we now know where the blood is going.
Dr. Qadri wants us to go to San Antonio and see a Dr. who works with Cancer Patients and does experimental tests and drugs.We want to know why we need another Dr on the case and Dr.Qadri saud he is doing all he can here that Ed is being kept alive with the transfusions and we need to try something new.Ed's not sure he wants to keep this up as it's hard enough to go to Houston and back.And now with more Drs and more tests,he's just not sure.But Dr.Qadri and I talk him into making the appointment and just hearing him out.
He will make us an appointment and call tomorrow.