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 [http://www.charlotteplummers.com/cp/] 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. http://picclinenursing.com/picc_why.html
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.....