Monday, June 22, 2009

2009-08-June Monday

I am going to add this last entry to Ed's blog. As most of the family and friends know now, at 1:15PM on June 8,2009, Ed passed away in my arms in our home,with our grand daughters Andrea and BreAnne, his oldest son Christopher, along with a wonderful Hospice nurse at his side.I have spent 25 great years with this man and letting go was the hardest thing I will probably do in my life. At 5am this morning he told me he loved me and even tried to play "Patty Fingers" with me.He was given a bath and shaved at 10am by a very caring Hospice nurse. He was then resting comfortably and we knew in our hearts he was ready to pass.He was my husband,my friend,my lover,my playmate and we had some of the best times in our lives together as well as some of the worst times,and I am going to miss him dearly. I want to Thank the good Lord above for sharing him with me on this earth, Since we knew of his impending death Ed and I talked about so many things including, how he would "Wait Just Beyond The Moon" and I would join him there when the time was right. I love him and will miss him with all my heart.................

Monday, June 8, 2009


We had to call Hospice last night,he became very combative and upset.He was soiled and we changed his sheets and cleaned him up and he slept most of the rest of the night in a peaceful state.We will be having an Aide in daily now to help with this process. He is not in any pain,but he does know what is going on around him.He can hear everything.If we are in the room and talking he smiles at us,if he is uncomfortable he is fitful.His vocabulary is now only at a few words, but you can understand most of them.Our grand daughters, Andrea and BreAnne, and I are rotating shifts so we may give him 24 hour attentive care.

Saturday, June 6, 2009


This morning he had a very hard time getting out of the bed. Each time he tried he would fall back and go back to sleep.His meds are keeping him dozy but this stage of the disease is also causing him to sleep.Pat talked to him about Hospice bringing a bed out for him.He finally agreed,so as of today he will be bed ridden.Our only problem is he still can become lucid for short periods and it upsets him alot to not be able to get out of the bed for bathroom duties.He hadn't had any food intake now in 4 days.When we tried to cook in the house for ourselves he got very sick at his stomach and now everyone here is on grazing foods.He has pretty much lost his voice and is waving his hands and looking into the future.They call this the transition period.


I know it has been a week since I added anything to this blog but so many changes have taken place and since Ed's children were planning a trip here to visit and the house has been so full of people it has been hard for me to sit and update.
His condition is now a waiting game.Since we can not draw blood we have no idea what his counts are we just know if we see any color in his skin its good... As long as he keeps his feet up we can control the swelling and purple tints to his toes.
In the last few days he has tried to eat he has we have gotten very sick at his stomach,and thrown up everything he puts on his stomach and only wants icy cold drinks.
Tuesday night he wanted to sleep in his own bed and did a good job of sleeping but he is getting very restless.He can no longer swallow,and was given liquid morphine .05ml very 4 to 6 hours,but that has since gone up to .10ml very 4 hours. About 10:30 he ask for the hospice nurse to come out because he was so upset and scared about something.We never really figured out what it was but they added a medication of HALOPERIDOL [for nausa and aggravation.We give this to him especially at night and if the house has too many people and activity.
Early Wednesday morning again we called the hospice nurse as his breathing was labored and he was very restless and aggravated and at one point was talking in his sleep.She said his blood pressure was up so it meant he was in pain.His children arrived for a visit but he is now sleeping most of the time.We have no idea how much he weighs,but the bones in his back and shoulder are protruding and his spine bones can be counted.
Wednesday night he tried to get up in the middle of the night and before I could get the light on and around the bed he had fallen into the bedroom door.
His children left Thursday morning after their visit.
Friday night Pat and Linda came for a visit.

Tuesday, June 2, 2009

2009-05 -31-Sunday

OK a fun note....We wake up to the "hillbilies" in our yard and I am so happy to see them and happy to have another room just in case we need it...Shane and Andrea are finally here.Marie arrives and now the house is really full.
But a sad note is Amiee,Joe and Colton have to go home...


Had a couple of rough spots saturday,Michele was here and he was feeling some pain and having some labored breathing.She listened to his chest and heard some lung sounds so she felt we should call and tell the hospice nurse.She came out and said he did have an elevated heart rate and that he had a low grade fever.But he is still fighting,Going to the porch,smoking and having coffee with Michele and Smokey....And Butch, Bre and the boys came out for a little quality time.


Had a bad day and had to call Hospice.His blood pressure was 100/60 and has been for 2 days now.He started out taking pain pills 1 every 6 hours but today we found he needed 2 every 4 hours,so the hospice nurse came out and he is now wearing a Fentanyl patch.He can still take a pain pill as a buffer.The patch started working almost immediately and did not need a buffer for 13 hours.He is having a hard time swallowing so they have put him on "Thick-it"to make water a little thick so it more or less slides down the throat.Breanne,her boys [Jaden,Bryent and Lane],Butch and Threse arrived.

Thursday, May 28, 2009

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.


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.


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.

Monday, May 25, 2009


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.

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.

Sunday, May 24, 2009


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.

Saturday, May 23, 2009

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.

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...

Tuesday, May 19, 2009


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.

Sunday, May 17, 2009


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...


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...

Sunday, May 10, 2009


Just a Quite Saturday morning on the porch

Friday, May 8, 2009


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

Tuesday, May 5, 2009

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.

Saturday, May 2, 2009


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 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

Friday, May 1, 2009


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.


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.

Tuesday, April 28, 2009


Not a good day.
Sunday Ed said he felt dizzy when he stood up and felt full in the stomach area and hadn't even eaten. he had a bit of a rough night.Monday he said we could just wait until Tuesday which is lab day but this week we see Dr.Qadri. but his night was really bad and he us up alot and did have a few sweats.
This morning we got up and I could tell he didn't feel good at all but he wouldn't say much,but about 9am he finally said he thought he was in trouble.So we went ahead and went to the emergency room.By the time we arrived he was hardly able to walk on his own. His Temperature and blood pressure were low.His HGL dropped to 7 and his platelets were below 20.So he has been admitted and is getting whole blood and platelets this time. BAD WAY TO SPEND YOUR BIRTHDAY.Andrea and the kids made cup cakes for and I took them to the hospital and he ate 3 and fell asleep.I am taking Andrea add the kids to the train in the morning so they can get back to a regular routine,,,,,,,,,,,,although Harley said he doesn't want to go home he wants to stay with granny

Saturday, April 25, 2009


Ed wakes up to two grand kids running thru the house and wanting breakfast.He was happy and it was fun to watch, as he watched his great grand kids in action.
Today is dressing change day and lab work.It is in better shape this change since he has figured out if he's not so rough on that arm it won't seep,which means the dressing won't stick and pull when changed.
Today's counts:::HGB is 12.0, his RBC is 4.09,,this is the highest ever and it looks like the Procrit is working.BUT::: he is still having to be pushed about the Oxygen so his count there was 82 and falling.And his platelets were at 24 and of course we are watching that very close.But one of the Revlimid side effects is lowering the platelets.
He did go visit Mike and Quitman for awhile in the barn and came home hungry.
He got his Dexamethazone and Revlimid before bed and did some sweating during the night but did sleep good..

Wednesday, April 22, 2009


It was change bandage on PICC line day,lad and first Procrit shot.He really hates Tuesdays and Fridays as we now have to change the dressings, and caps on his Picc line.This week's change was a bad one as he had some bleeding and it was really stuck but the insuration site was clean and looked good,but he was in a really bad mood for a while.He does have a habit of using that arm for heavy work and lifting putting some pressure on the site.
His hemoglobin was 9.0 and his HBC is up @ 3-11,we are watching his platelets @ 25.If they go below 20 he will need a platelet transfusion which he has not had yet.
He had his first PROCRIT shot at the hospital [with his favorite nurse DIANNE][who gives him what-fer] and was told we won't see much climb in his RBC count for a few weeks.
He did go shopping with me some but tired out and it was getting hot out so we came home,turned on the AC and closed up the house and the temperature rose in the house..We called Pat and Quitman came over and helped and we got it back online and it finally cooled down.But i was really worried as he was on the verge of a heat stroke.But he went to bed feeling better but very tired....
Then we went to have lunch and he had a CHOCOLATE dipped cone..

Saturday, April 18, 2009


Well I now know what to look for,he usually feels tired and wants to go to bed early but last night he was even more tired and it was a little hard to get him up and moving.But he was ready to go to the hospital when we finally got ready to leave.He knows he will feel better when the transfusion is over and he gets home.I had to work and Smokey was kind enough to help and pick him and bring him home.As usual he was hungry when I got home and he had a nice full supper.

Friday, April 17, 2009


Well this has been a really bad day.Ed is so frustrated, he was up so much last night with the shoulder pain.And then we go for our weekly lab only to find out his HGB [hemoglobin] is down to 7.9, platelets down to 30.,and RBC [red blood cells] down to 2.59. And his attitude is really down.He is short tempered,very grumpy,with a loss of appetite. So we know what this means-- he's off to the hospital for cross matching and will get another transfusion tomorrow. Or as he calls it another oil change.So we are off in the morning by 7am and about 1pm return home feeling a little better with a better attitude.
The only problem is I wonder how bad tonight is going to be when I have to give him his Dexamethzone,which usually makes him sleepy and want to go to bed early.I guess I'll find out soon enough.

Thursday, April 16, 2009


Ed was up during the night with left shoulder pain and it has really bothered him today.He's been taking pain pills.The weather has been muggy and I hope it's just a bad case of arthritis,but the fact is we need to face that it could be his bone. but even tonight he is still taking the pain pills.
The Home Health Care Nurse was here and she stayed and talked to us for a long time.Ed was still asking if she thinks he could ride the mower and do yard work.Even if he wears a face mask,but she [as everyone he asks,including the doctors] said .He even wants to go camping and swimming,and she did say under the "right" circumstances he could go camping,but under "no" circumstances,can he go swimming...She is going to find out if she or another RN can come to the house and give him his PROCRIT shot once a week.If not,we have to register in the hospital just for a shot.
Second round of REVLIMID has arrived:::
This afternoon the meds arrived and we gave him his first dose.And tonight he is very tired and went to bed early.It was the same thing he went through for the first few days during his first round of Revlimid.

Wednesday, April 15, 2009


ACS [the drug store in Florida, where the prescription is for REVLIMID] called and they haven't gotten the approval papers yet and the prescription expires Friday.I called this morning and the girl I sent the e-mailed papers to AGAIN is off the next couple of days.WHY didn't she tell me that when we talked on the phone???? Anyway I copied all 7 pages of the approval papers and took them down and paid to have them faxed with an approval they received them.Well I came home from work and Ed said they [ACS] called and the REVLIMID will be shipped overnight.So hopefully we will be back on course in a few days.

Tuesday, April 14, 2009


our regular tuesday appt with Dr Qadri was a little upsetting but with some good news.Ed managed to pull some kind of a folly on the nurses and now they ALL look forward to seeing him and today was no different.He had them in laughter tears and we finally got his blood work done after a few trys at TRYING to be serious.His hemoglobin was down to 8.8,platelets up a few points at 35,but his red blood count is falling at 2.88.His weight went south, at 146 now.He was 151 Friday.This is a problem to me as he really eats well.So Dr Qadri has signed a prescription for PROCRIT shots once a week, which can only be given at the hospital.So I am planning to do this every Tuesday after lab. We still haven't received the REVLIMID so I called and the papers I filled out and sent in were not received, so I sent them again this afternoon by e-mail and will call in the morning and find someplace to fax the darn things.What really is madding is, they are the same papers we filled out last month and have to do every month as long as he is on the medication.And he has to take a survey every month explaining the side effects of the meds.
REVLIMID® (lenalidomide)

Next Appt is April 28th @ 2pm

Sunday, April 12, 2009


Ed's blood count Friday morning was 9.4 ,platelets are at 33. So this means he dropped a point in hemoglobin since Tuesday and his platelets are falling again. He will most likely have to have a transfusion this next week. I am having a little trouble getting his Revlimid and I have filled all the papers and talked to all the right people so if nothing happens by Tuesday I will be Finding out what is going on..
My brother Pat and his wife Linda came down from Austin this weekend to replace our air-conditioner,and the A Coil.It all went out the same time.Ed even went over to the barn with Pat.He had a big day and enjoys Pat's company.
I keep saying how bad 2009 has been so far and I can,see it getting any better any time soon,so I am TRYING to remember that at the end of the day to find our silver lining.Well this weekend it was Pat.Thank You so much for all you did for us.

Thursday, April 9, 2009

2009-04-09 thursday

The home health care nurse was here today and said all was good.Ed does look little pale but he has Lab work in the morning and we will see what the readings are.I am working so Smokey is going to drive him in.....

2009-04-08 Wedsneday

He had a good night and we went to Houston as we had an appointment with Dr.Weber [multiply myeloma,, doctor]. We also needed to get new supplies since I used all 4 dressings in 2 weeks.He is really hard on that Picc line.It keeps bleeding an I want to make sure I am doing what needs to be done and doing it right.
Dr.Weber says she see's improvement in the Myeloma,but can see no change in the MDS.The Spleen is down about 1 mil. That's not bad news,but she said Dr.O'Brien did say it could take a couple of months to see any degree of improvement and we need to see her,since she is the expert in MDS.
I brought up the fact Ed wanted to do his yard and ride the mower and do his gardening and Dr.Weber gave him a talk about his defense system being "LITTLE TO NONE".and she thinks he shouldn't even try as the dirt,grass,cow fields all around us and in general the wind can do great harm to his immune system and he gould get an infection that he might not come out of.And of course his spleen is still in jeopardy.
But the good news is Dr. Weber said she doesn't need to see us for 2 months.But we do need to call Dr.OBrien next week and see if she wants an appt.She is out of town right now.We went down to Infusion to get the dressing checked and get more packets since we don't come back for a while.
The nurse ask me if I wanted her to change the dressing and I said yes I wanted her to check my work and the site of entrance.She gave us a THUMBS UP and said it looked good.I really don't like doing the dressing change and I am always afraid I am going to hurt Ed,but he is giving it his best and even reminding me of missed steps.We got a different kind of dressing ,this time with a paper tape covering, since he is so rough on it,and it won't tear on is tender skin, and I need to change it twice a week....O' FUN!!!!
On the way home we treated ourselves and stopped for fried oysters at a cool place on highway 59.
Smokey [sister-in-law]has set up a blood drive with MD Anderson here in Victoria,for April 25th.She has been working on this for a couple of months now,and it is coming together nicely.


He did have some sweats last night and toss and turned alot but he woke saying he feels better.
We have lab @ Dr. Qadri's office.His Hemoglobin was the highest @10.2,Platelets @46,but we still have a problem with him understanding his oxygen readings.He didn't take his tank up with him and he had to wait almost 30 minutes to see the nurse so his reading was 90. And now I know he is smoking again.He doesn't even hide it from me anymore, but I won't let him smoke in the house. Later in the afternoon he is feeling a little tired and slept most of the afternoon. He said he felt like he was coming down with a cold.He went to bed early and was not hungry.That bothers me but I try not to argue with him.


Molly went home.I love and thank her for being here and helping...

Wednesday, April 8, 2009


Well,,his hemoglobin is HIGHER THAN EVER @ 10,Platelets are rising to 42,but he still needs to keep his oxygen on because when he takes it off it can fall to 90 quick.But I think he's sneaking cigarettes too.I talk to the nurse and she can start the process of getting the pills renewed today,they gave him a prescription[Hydroco/APAP 5-325M] for the shoulder pain I called Houston for appts with Dr Weber and when we get there I WILL be asking a few questions.Our appt is for lab,and 24 hour urine, Monday morning[the 6th].Dr Quadi wants to see us the 11th @2:00.


OK--Dr never called,and I used up the few pain pills I had,, but we do have regular Friday lab in Dr Qadri's office today, so I will ask then...And since we missed our appt in Houston with Dr Weber to get our Revlimid refilled I need to talk to someone about that.And we haven't been sent or called about our appts in Houston for labs,or either Drs appts and especially the one we missed with Dr. Dilley for the bladder mass.We feel lost,like we're losing control of our what we need and how to get it back!!!!
I think my caregivers patience is wearing thin and I need to get back on track and GET CONTROL....

Tuesday, April 7, 2009

last of the e-mails

2009-March 24 thru April 2

Wednesday night 04-02
This is one of the worst nights yet.He woke up at 11:58 and was complaining his left shoulder is really in pain.He has rubbed it with BenGay and it hasn't worked so I get up and find a pain pill and heating pad.He says when he has the oxygen on and tries to breathes it hurts too bad to even lay down so he gets in his chair and sleeps the rest of the night.I called the doctor this morning and they are supposed to call me back.I found some Darovset pills and it has made him feel better and the doctor still hasn't called......

we get up and off to the hospital we go for 2 more pints of blood.He is in good spirits and now calls them his "oil change". And they do make him feel better afterward.He has a good appetite and is hungry.

Tuesday April 1st
Sure enough our appt with Dr.Qadri showed his hemiglobin is at 8.1 and his platelets are at 26.Ed needs a transfusion.So we go over to the hospital and get signed in for in the morning for more blood.

Monday night March- 30th
Ed had a really bad night and told me he felt like something was wrong and he would probably need a transfusion.His skin was pale,he has no appetite and he is feeling weak and tired and goes to bed at 8:00.He is now starting to know the signs,and his left shoulder is hurting a little.


Pat had to go home

Ed had a really bad night.He woke up twice with night sweats and I had to clean him up and add towels under him.The next morning he had some blood on his Picc line bandage,this time enough to have to change and find the problem.Pat helped by following with the instructions and Ed remembering the procedure, I got it changed.The blood was caused be a tiny blood vessel under the tape to seep.But I will tell you I was scared.It was a stressful day at work for me..

Friday-March-27th -----
9:45am---turn in 24 hr urine collection
11:30----certify to change Picc Line Dressing
Well the first thing out of the hat is the nurse in the Lab said she can't draw blood from the Picc Line without a signed permission frpm the Doctor...Well they are the ones who authorized the thing Ed had a fit and would NOT her draw from the other arm.I can't blame him,he'd tired of being stuck twice and sometimes more a WEEK! Couldn't find the doctor, so the lab nurse said ok this time, but be sure to get the permission paper signed before returning.Went down and changed the dressing in front of the nurse in Infusion Dept and he said I did well and sent us home. Our next appt is Wednesday the 1st of April...Ed got his meds and was tired so went to bed at 8pm,was a long day for him getting up at 4:30am.Pat came in a little after that to spend the weekend.


Smokey(my sister-in-law) took me out for lunch and a little shopping...When I got home he had some blood [about the size of a quarter] on his Picc Line bandage and I called Dr Qadri's office and they told me I have to call Houston since they put in and find out what to do.They said it sounded like it wasn't anything to get upset about it could wait til morning.

We had an appt with Dr.Qadri and his platelets are UP TO 39!!!and his Hemoglobin is 10.7!!! We don't know how but we are so happy and he is in a great mood.His left shoulder is bothering him some but not enough to complain about.We are going to take Molly home today and make a road trip out of it as he wants to go through Fulton and have lunch on the water and get seafood. We go to Charlotte Plummers [] and have a great lunch and then go into Ingleside to drop off Molly at home.It was a nice drive and he enjoyed the trip...

Houston: EMS to hospital

Well this week was an exciting for us both.We decided to leave on Monday after I got the car gone over and needed a new battery as the one I had has a couple of dead cells.So we left in the afternoon and wanted to Galveston and just ride the Sea Wall and see how much progress after Hurricane IKE.They have done alot and since the weather was so nice there were alot of folks on the beach.We had Lad and an appt. in Houston on Tuesday and two on Wednesday. Dr. O'Brien decided since Ed's poor arms were being used twice a week for blood draw and it is getting to be about every 10 days for at least 2 blood transfusions his veins were becoming very weak and starting to collapse, he needed a PICC line.
Ed agreed to this immediately as he is tired of being stuck and he is bruising so easily now.We were going to have this done on Wednesday after our visit with Dr. Dilley the urologist.His Hemoglobin was 9.7 and his platelets were dropping and were at 32, but Dr O'Brien said we would watch and not worry til they hit 15..So off to the motel we go for a nice evening of rest and a good movie.
Well about 3am Ed started to have some severe pain in his side and it was traveling up to his left shoulder.By 6am I was becoming scared maybe he may have ruptured a blood vessel and needed help so we called the EMS (THANKS TO MICHELE, who he wanted to talk to before we called EMS) and he was taken to the emergency room.His hemoglobin dropped to 7.3 and his platelets were now at 21. So he received his PICC line there and was given a room (which we didn't get til midnight).He needed 2 transfusions, but since it has to be radioactive we had to wait most of the day.We were told he was having Splenetic infarction's.
His feet are now starting to swell pretty bad,and he has some Pneumonia in his left lung and was put on Antibiotics.He was so happy they didn't have to stick him with another needle,he had a PICC line!He got his transfusions and he had a fit and wanted out of the hospital NOW! so they let him come home Friday.We arrived her about 9:30pm. But he has to go to the Lab and see Dr Qardi Tuesday and watch the level of his platelets.And if they get down to 15 he will have to have a platelet transfusion.
We are now at a stage where we feel Ed should not be left alone,as he really is bored and doesn't eat right.And he still feels he can do anything.But the spleen is still in serious Jeopardy!!! Molly (another sister) is with us this weekend..


2009-03-14th and 15th
This was a weekend that we can call productive! My sister Michele (a nurse) came to help me and Ed.I have been very protective of Ed and did not want him to be upset or in fear of his future so I have been very selective of the things I explain to him about his cancers. While I was at work he ask her alot of questions and since she has a better way of explaining the prognosis of his diseases she answered all his questions. He now knows most of what he can expect in the future.I made a promise that from now on I would tell him everything I could about what was told to me and if we did not understand we would find out.I am glad she was here and Ed has got a new friend..Michele calls as often as she can (at least a couple ot times a week) and he looks forward to her calls.


Well,we are home and doing alot better.He got two transfusions (4 pints) during his stay in the hospital.His potassium was also very low and that was a problem due to the vomiting. He got dehydrated and that caused him to be lethargic and combative.But as he says he got a new oil change and we are doing better.The only problem is it can and probably will happen again as long as he is on CHEMOTHERAPY (Revilmid).So I have cut back my hours at work so I can be with him more often.We go to MD Anderson this week for lab and office call with Dr. O'Brien (MDS). on Tuesday.Then On Weds. we see a Dr. Dillion to get the up-date on his bladder mass.He is going to start seeing the home health nurse once a week from now on because of these problems.

Sunday, April 5, 2009

EMS called

Ed had a very bad night. He said he had a stomach ache and was very restless with sweats all night. About 3 am he got very sick at his stomach and started vomiting, but this part of the side effects of his meds so we were not real concerned. At about 6am he became lethargic and combative. I called the lifeline nurse and she notified Dr Anderson and Dr Qadri who said to get him to the emergency room.She called the EMS and since Ed is not completely aware of things around him he let them take him.When he got to the hospital and got the blood work back his hemoglobin was at 6, platelets at 42 and blood oxygen at 79, he was dehydrated and had a low grade fever.He was admitted and prepared for blood....

Wednesday, April 1, 2009


so we take our first 8-4mg of "dexamethasone",and start with the Revlimid.And a couple of pills to help him deal with the side effects (Prevacid 30mg,for acid & Valtrex 500mg for Shingles).Now all we can do is PRAY!!!

solving problems

since she was so quick to solve our problem with the Revlimid,we thought we would see if she could help us solve the problem of coming to Houston every Tuesday and every Friday just for Lab and a 15 minute visit with one of the doctors.It is 136 miles up and 136 miles,a 2 1/2 hour drive and just an hour or so.She said it was because we need to watch the platelets even closer now that he will be on Chemo as it has a side effect of dropping them quickly.But she did say if Dr. Qadri's office would approve we could have it done in Victoria and they could send the results be E-mail the same day.We have an appt. in the morning and we will ask----HE APPROVED!!! Ed and I think we heard the car "sigh with relief".Our next appt. in Houston will be the 17th with Dr. O'Brien and they want us to have a second opinion on the Bladder Mass with a Dr. Dinney on the 18th.....

Tuesday, March 31, 2009


Well we left at 4:30 this morning to go to Houston.
9:00am lab
10:30am Dr.Weber

SHE IS PISSED!!! why hasn't the Revlimid been started.I said we were not approved yet and she walked out of the office and came back and said we would be approved within one hour...AND WE WERE!!!Just go home and wait for the phone call within 24 hours for a few questions and get a delivery date.It's 168 miles from our house to MD Anderson (a 2 1/2 hour drive) and when we got home the call was on our answering machine.I called back answered a few questions and it will be delivered with 3 days.

second day


8:00am Business Center Follow-up
8:30am Dr. Donna Weber (the Multiple Myeloma Cancer specialist)
she explains and draws us a picture of all the problems Ed has and the challenges he faces.He is facing a long and hard road.The best way right now is to take the drug REVLIMID (a pill form of chemotherapy) and Dexamethasone (a steroid).
With only the Myeloma and the drugs @ 25mg he would have a 95% rate of remission....With just the Multiprolifeative Disease: Myelofibrisos and Revlimid 10mg and the Steriods he could get up to 75% remission,, but with the Myelodysplastic it lowers the rate and now with all three problems and both drugs,,, he has a 30% chance of remission.But because he has such a large spleen and low platelet count she is going to start him on 5mg...So we fill out the papers and she writes a prescription.WHICH CANNOT BE FILLED AT ANY PHARMACY! so we have to apply for the drug through the pharmacy at MD Anderson..
Now we go home and wait for the drugs to be mailed to us and hope we got in the program that costs us less than $4000 a month.
Now I cry at the drop of a hat.Everything is going wrong.If it weren't for bad luck I'd have no luck at all .

MD Anderson


Monday 02/23
10:00am blood/specimen collection
10:30am EKG-resting
2:00pm Bone survey
2:50pm Dr.Susan O'Brien (the Myeloprolifeative Disorder cancer specialist)

ive Disorders:

(myelo = bone marrow, proliferative = rapid multiplication), the blood-producing cells in the bone marrow (precursor cells) develop and reproduce excessively or are crowded out by an overgrowth of fibrous tissue. Typically, these disorders are acquired and not inherited, although rarely there are families in which several members have these disorders. It is likely that family members inherit a predisposition to the disorder rather than the disorder itself.

Three major myeloproliferative disorders are polycythemia vera,[myelofibrosis,] and thrombocythemia. The proliferation of blood-producing cells is always noncancerous (benign) when it begins. However, in a small number of people, a myeloproliferative disorder progresses or transforms to a cancerous (malignant) condition, such as leukemia.


is a disorder in which fibrous tissue replaces the blood-producing cells in the bone marrow, resulting in abnormally shaped red blood cells, anemia, and an enlarged spleen.

Myelodysplastic Syndromes:

In myelodysplastic syndromes, a line of identical cells (clone) develops and occupies the bone marrow. These abnormal cells do not grow and mature normally. The cells also interfere with normal bone marrow function, resulting in deficits of red blood cells, white blood cells, and platelets. In some people, red blood cell production is predominantly affected. Myelodysplastic syndromes occur most often in people older than 50 years. Men are more than twice as likely as women to be affected.

The cause is usually not known. However, in some people, exposure of bone marrow to radiation therapy or certain types of chemotherapy drugs may play a role.

Symptoms develop very slowly. Fatigue, weakness, and other symptoms of anemia are common. Fever due to infections may develop if the number of white blood cells decreases. Easy bruising and abnormal bleeding can result if the number of platelets drops.

A myelodysplastic syndrome may be suspected when people have unexplained persistent anemia, but diagnosis requires a bone marrow biopsy.

People with myelodysplastic syndromes often need transfusions of red blood cells. Platelets are transfused only if people have uncontrolled bleeding, or if surgery is needed and the number of platelets is low. People who have very low numbers of neutrophils—the white blood cells that fight infection—may benefit from intermittent injections of a special type of protein called a colony-stimulating factor.

Although myelodysplastic syndromes are thought to be a type of leukemia, they progress gradually, over a period of several months to years. In 10 to 30% of people, a myelodysplastic syndrome transforms into acute myelocytic leukemia (AML). Treatment with chemotherapy during the early stages of a myelodysplastic syndrome does not help prevent transformation to AML. If transformation to AML occurs, chemotherapy may be helpful, but the AML is unlikely to be curable.

Multiple myeloma:

is a cancer of plasma cells in which abnormal plasma cells multiply uncontrollably in the bone marrow and occasionally in other parts of the body.

Well that's a mouth full to swallow!!!We knew it could be a rough but DAMN! this is a tough...

well we knew it would be rough but now it's going to be tough too!!!

Marie has to go home

Well I knew it would have to happen.Marie needs to go home and Ed is going to miss her so very much.It was good having her here to be with her brother and help me on the days I need to work.I am now going to cut my hours to only 3 days a week,Saturday, Sunday and Monday..I know this will still be hard but with going to Houston at least twice a week and possibly staying overnight I do need the money...

Monday, March 30, 2009

our first day @ MD Anderson

OK,,we have to be there at 7am and the motel shuttle doesn't start running until 7am...bad start...but we can call the hospital campus shuttle and they run from 7pm until 6am...Ed, Marie and I are up and running starting at 4:30 with baths,COFFEE,hair,get dressed,walk Max,oxygen tank and get to the shuttle.
7:00 new patient registration
7:30 nursing visit
8:15 blood/specimen collection
11:00 bone marrow ASP/BX (bad mood starts) Marie goes back to the motel to walk Max
1:30 chest,PA & LAT
4:20 Dr.Susan O'Brien (the myeloprolifeative disorder cancer specialist)
But we have a 7.9 Hgb so all is on hold WE NEED A TRANSFUSION!!! appointment in the morning to get this done

Friday, March 27, 2009

arriving in houston

OK, so off we go towards Houston. Marie is going to drive,Ed is going to tell her how fast she's going and "banter" about everything,,,and I am in the backseat with Max and am going to text Amiee all day!!!!.We had lunch at Dairy Queen.As we get closer to Houston Marie is looking up motels (that takes dogs) on the GS..and we start calling ..Thats not easy,so she stops in Rosenburg (just south of Houston and goes in a Petsmart to ask for a motel directory for pets..Don't have one..So we try to find the Hospital and ask for if they have a list for motels and if they know of a dog friendly motel..Got there,,in I go to ask and yes they have a motel list but not for pets,will just have to set in the parking lot and call around and ask...Found one!!! now back to the GPS to find the motel.FINALLY! after leaving Victoria at around 11:am we arrive at the motel around 5:30pm..Get un loaded and now we're we go to find a place to eat,,and Ed wants a banana split for supper...OK now back to the GPS,,,we find a Denny's (GPS systems are VERY overrated).MORE TO THIS STORY>>>IF YOU WANT TO KNOW >>>CALL ME!!!! but had a great banana split...I am so tired and we just got there

WOW that was fast

We were contacted and set up with appointments at MD Anderson's Leukemia Center and were told to plan on 3 to 5 days up there.So we will leave Sunday February 15th, (Ed,Marie,Max and I ) get a room and settle in for a few days.Our first Appt. is Monday morning..We packed up clothes,brief cases,and the oxygen machine with 46 feet on line and we are on our way...

Dr. Qadri

this was a very upsetting appt. as we were turned down for "REVLIMID".But they are going to try another approach to getting it. AND IT WILL COST $6000 for 21 days AND Insurance will only pay for $2000-----THATS $4000 TO US!!!!! you have got to be kidding!!!
Ed said NO WAY!,,Marie's mouth fell open and I said What are we supposed to do "watch Ed die"????
Marie and I both almost yelled at the Dr and he is HAS NO bed side manner.But he did tell us we are approved to go to MD Anderson and someone will be calling us soon to set up a time and Doctors name..

Marie came to visit

Marie and Max (her cocker spaniel ) got to come and visit and help.


Ed got an MRI on his shoulder,abdomen and chest

Citizens Hospital

Ed received a transfusion of 2 pints of blood (we are now up to 8 pints)


They ran a blood test in the office and found Ed had a hemoglobin count of 7.3 and will need another transfusion.His blood pressure is very low and he said he was seeing "fuzzy" in his left eye.His spleen was still very large.We were turned down for the prescription "THALIDOMIDE" ,so we are going to try another chemotherapy pill called "REVLIMID" along with "PREDISONE".Dr. Qadri also wants us to have a second opinion and will find us a Dr. in San Antonio or MD Anderson.

Dr. Anderson

An appt. with Dr. Anderson found his lung is better but he still hears some wheezing.He was given an inhaler of "Advar".

And Sam's Club is cutting hours and jobs and I am being transferred back to the cafe for the time being and I REALLY DON"T LIKE THAT JOB!!! that's why I transferred out to the lady Demos.

Andrea left

2009-January-10 thru 26
Well it's time for Andrea to go home and I will miss her very much.She has really been a big help and she and her grandpa got along great and she caught up on book-reading (all the TWILIGHT series)and TV watching...CNN & CSI (LOL).Also thanks to Lindsey for keeping the kids and managing to keep her sanity..We drove up to San Marcus today and she caught the train to Ft. Worth and got there just before the roads were closed to a big ice storm in Oklahoma and north Texas. She will get to smother her kids with love and Shane will be there in a few days...THANK YOU ANDREA!!! I will miss you very much

the bladder mass

We found a bladder mass while in the hospital,but the urologist (Dr. Kopecky ) said he didn't think it was connected to the cancers so he was given "Flomax" to shrink it.Well Dr. Kopecky's office called and wanted him to come in for a check-up.I have to work today so Andrea took grandpa in to his office and he was given a cystoscopy and they did find a tumor at the base of his bladder.But with the "Flowmax" they would wait until the cancer was in remission and then go in and remove the rest of the tumor.

Thursday, March 26, 2009

FINALLY!!! a prognosis

Dr.Qadri (our hematologist ) office called and they have an opening today and it's a few days early.So Andrea,Ed and I get dressed and off we go with fear but happiness in our hearts as we will find out something,anything today.It has been a very upsetting week waiting to find out what we have and get on a treatment and get this cured, if it is indeed cancer.Well that was a surprise!!! What is
And how do you pronounce
he was sent for more blood work,a 24 hour urine test,and a skeletal x-ray with a follow-up to decide whay stage of cancer he is in on February 3rd.
he was signed up for "THALIDOMIDE" and "DEXAMETHASONE". So we go home Ed is very tired and Andrea and I talk and cry together.I am really scared now and Amiee and I are really searching for these diseases are and how they treat them.

finding out

we had an appt. today with Dr.Anderson. It is reveled he has an infection in his left lung and now has COPD.He was put on an antibiotic (Levaquin 500 mg) for 5 days and Mucinex for 1 week. So off to the drugstore and DAMN!!!! 5 pills for $45.00.OK this is going to get expensive.Thank goodness for Andrea who tries very hard to reassure me this feeling will pass....He is now on 24/7 Oxygen which a home Health Care Nurse brought out and put on Life-Line (a bracelet he wears all the time in case he falls.And we went to get a portable machine so he could go out and still have oxygen

new year-real problems

our regular yearly appointment with Dr.Campbell found low blood pressure and his heart was beating erratic. He ran and EKG and wanted blood work, and an Echo gram done..
2009-January- 7
9:AM---we went in and had blood work done
3:30PM---Dr. Campbell called and we are to contact Dr. Anderson immediately,he is waiting on our call...he has a very low hemoglobin,platelets, and blood pressure...
4:pm---get him to the emergency room now....
4:30pm---arrived at the emergency room and he is admitted immediately...his hemoglobin count is "5", platelets are "41",oxygen level "79"--HOW DID HE WALK IN was all I heard!!! what the hell did all this mean..I have been scared before but this is out of my reach of understanding...I started texting Amiee and now I have someone to be scared with me.But as usual she is trying to be support for me....God only knows how she has to feel..
2009-January 7th thru the 13th
they say something about Leukemia,,and I don't even know how to spell it.He needs 6 transfusions to bring his blood count up to at least 10,but can't get it above 9.2.He is put on 24/7 oxygen,and his Atenolol is cut to 25mg.He is given a Echo gram,x-rays,and the dreaded bone marrow draw.They have found Multiple Myeloma.Thanks to Amiee,who starts searching everything she can find on the disease we are learning "QUICKLY" not only how to spell but to pronounce some of this stuff.Then they find he's got a left lung infection,so now he is getting antibiotics.Shane calls and wants to know if Andrea comes will she a help or a hindrence to me..GET HER HERE NOW was all I could think.Amiee is sending out the e-mails for me calling Eric and Larry.Butch is in Iraq and someone felt the need to contact him and that upset me as I felt he didn't need to know too much before we could give him some news and right now Ed is not going to die any minute,and he is being cared for and we don't need to scare Butch while he is over there.But instead of calling me and asking for a progress report or even asking about him,,,someone decided on their own to go over my head.I was hurt and when I told Ed, he was hurt and angry.

how it all started

We had a regular appointment with Ed's cardiologist ( Dr. Campbell ) to get his yearly prescription of Atenolol 50mg refilled.He weighed in at about 40 lbs less than the year before and his toes were turning a little purple and his left shoulder was hurting him.I told the doctor he had pretty much lost the weight over the last summer and during the holidays.Dr. Campbell told Ed he felt he had some kind of cancer in his body and wanted him to find a primary doctor and have some tests done.So we found Dr.Kevin Anderson. The first thing Ed wanted was to find out why his left shoulder was hurting.They throught maybe he had torn the rotocuf as he had already had the right done a few years earlier.We had tests done on that and found no tears but did see what could be diagnosed as some arthritis.So they gave him a steriod shot and some exercises to do.They also did a colonostopy, EEG,complete blood work and mri and x-rays on his shoulder,which did stop hurting so they gave him another steriod shot.All tests came back INCONCLUSIVE! By now it was time for vacation,and Dr. Anderson told us to follow up with an appointment when we returned. Well that didn't happen! And as a very few of the family know I kept telling them THERE IS SOMETHING WRONG!!! Those who didn't think I was right said leave him alone and those who were around him most said I should follow-thru.,,they could see the change also.But Ed was feeling pretty good and didn't want to be probed anymore so he wouldn't go back.Thanksgiving Day he decided to quit smoking and had lost more weight and started to become weak and tired.By Christmas he was pallor,weak,slept alot and everyone around him noticed.He would not go to the doctor and yelled at me to leave him alone.His next appt. is with Dr.Campbell Jan. 6th,2009........

just a word of note

This site is going to be dedicated to Ed who has the cancers, but it also has to do with the caregiver who is me.We both go through !A LOT! of traumas and feelings along the way and as most of Ed's family and friends know he is not the one to show emotions or think out loud and I on the other hand, !DO! So this is sort of my journal to keep everyone informed of his progress, and challenges but to also vent my feelings, and challenges.