Wednesday, April 22, 2009


Well the floor does have a couple, and I mean couple, good nurses! LOL I think we finally got the good ones yesterday! Since I last updated, we talked to the dr on the floor. SHe said they like to switch up the anitbiotics and thus the reason for the pill switch. Thanks for telling us that before! UGH!

So he now takes that. James also has been having the night sweats. He wakes up with a wet shirt and of course that is irritating! He told that to the dr and she suggested sleeping pills so he will be able to sleep through it. Are you serious? Lets see.. sleeping 2-3 hrs drenches a shirt, so he changes it only to drench it. Now you want him to sleep 8 hrs in that 1 shirt and wake up soaked in a pool of sweat? Like the sweating doesn't make him irritable enough, but if he were to wake up in a pool? UGH! Needless to say, that pill is refused, and the pharmasist agreeed! ;-) It's off the list!

He had been tolerating the chemo pretty good until Monday. He started feeling nausea pretty good, so they added another anti-nausea iv that seems to help. He didn't eat much Tuesday, but it really helped overall. He also had the lumbar puncture Monday, and it was FABULOUS! The lady that did it was impressed that I knew how to get him in position, and it helped a ton! He felt the best after it!

On Sunday he was due for a dressing change. He told the morning nurse, who pushed it onto afternoon nurse who pushed it onto night nurse. So when she came in he mentioned it. She looked surprised, so James told her that if she brought in the kit, I could change it. So she did! I did James' dressing at the hospital where we pay people to do it.. Hmmm.... Oh well! At least it's right! ;-)

Then that night after 1 am the nurse comes in with news that he is getting blood! SHe said that since his counts were borderline they decided to give him blood! WTH! His blood was drawn at 5am, so the results should have been in by 8, and they wait until he is sleeping to do the blood? Mind you that means vitals every 15 minutes for the 2 hrs, and they wake him to do them! Poor grouchy fella! ;-)

Overall this time has been frustrating! We should leave the hospital today, then come back Thursday for lab, and dr appt, and lumbar puncture. We wanted to go home then, but it seems that we will have chemo next week (a bag that takes 30 minutes none the less) so we may have to stay until then! I really hope not! These trips aren't cheap! LOL SO that is pretty much the update.

Oh his WBC is 6.6, Hemoglobin 9.2 and platelets are in the 260s! ;-)

Saturday, April 18, 2009

Starting cycle 3

Well, we are back in TX now. We got in close to 11 pm on Wednesday night. Thankfully no drunk chicks at the hotel to deal with! ;-)

We had our appts on Thursday morning. First blood draw, then wait around for the bone marrow aspirate. Then off to the hotel for a couple hrs then back for our dr appt, which had us waiting almost 2 hrs for! UGH! All in all, it was good. His blood results had his WBC at 18.1, hemoglobbin at 8.7ish and platelets normal. The dr believes the 5% blasts they saw were from the neupogen, not cancer. SHe also had the preliminary results from the BMA and it had 6% blasts. Again she believes it was the neupogen, not cancer. We should learn more later.

Of course the hospital was full again so we didn't get a bed until Friday. THey called us at around 3:30 pm and said they had a bed. So we got up here around 6 (had to pack and then wait for shuttle) and then wait a bit downstairs before coming up to the 9th floor. UGH! The room was not ready for us like it should be! No blankets or pillows, no water pitcher, no booties, 1or 2 towels, dirty bed table, etc. This floor is not cool!

Then we heard them saying they were going to wait for the next shift to do things. Ummm. it's not 7 yet, so you are still on the clock! DO YOUR JOB! But I digress.....

They drew his blood, and finally at 11 started the mesna, and then the premeds, then the chemo was started at 12:15ish. It lasts 3 hrs. They gave him his night meds. They have on the list Augmiten for antibiotic. He takes Avelox. The only time he had AUgmiten was with that fever in Cycle 1. We aren't needing it and it didn't do anything. So we are waiting for the dr to find out whats up.

Still not liking this floor.. The nurses (except for last nights) seem to not like to be bothered and would rather talk and be noisey outside the room (we are in front of the nurses desk). UGH! SOOOO frustrating. Oh and did I mention they have a "quiet time" on this floor? Yeah... SO maybe we'll be noisey then since they don't know how to shut their yaps! ;-)

Otherwise James is doing good. Starting to get irritable, but that is expected. This is the same stuff as the first round, so BTDT so to speak! I will hope to update later!

Wednesday, April 15, 2009

Leaving Tomorrow

Well, we finally got James in to get bloodwork done... at the VA! At least the local VA is wonderful with good staff. So we went there Monday for a rountine 6 month checkup for his records there. They drew his blood, but didn't keep it warm (his blood never stays warm, and they have to warm it up and keep it warm), so he had to go back later in the day to have the CBC drawn.

We met with the Nurse Practioner and she is wonderful. We got all but 3 prescriptions now in the VA system which will save us a ton of money in the long run. She was really sweet and is willing to help us where she can. She called back that night and told us his results. Well they didn't make a ton of sense! LOL His WBC was 55.1!! That is EXTREMELY high for him. Maybe it's the neupogen, maybe it's not, we won't know until Thursday. His Hemoglobbin was 6.2, which is REALLY low, so they had us come in today for blood.

They gave him 2 bags of blood, so he should be good until we get to TX. That should raise his Hemoglobin to high 8's probably which is what we are getting used to. MD ANderson FINALLY called us back today to get the paperwork hopefully to our insurance people so we can get his disability pay that we haven't gotten yet. That is another UGH! I think we'll be having some conversations soon. We will be leaving in the morning to go back to TX. Thursday we have blood draw, bone marrow, and then drs appt, and supposed to get admitted... I won't hold my breath. So that's the latest.

Tuesday, April 7, 2009

UGh! Stupid people and home.

Well the neupogen started last Wednesday. Of course James just loves them! Ha! We then had dr appt on Thursday at 10. We didn't get in until closer to 11, but what do you do? His counts of course were low, (WBC-0.9, platelets in the 130/160 range, etc). His potassium levels were low too so she called in a prescription for those horse pills!

We had to wait until 2pm, as they said that the people that do them are only available during that time. Whatever.. It's a large hospital, I'm sure you have others! So we go back at 2:15 and meet our nurse, Loven... Seriously! He puts the cream on his back to numb it up, and we are to expect the lady soon. Well 10 minutes pass, and Loven came back to tell us that the original lady is unable to make it, so he paged Ms. Darling!

So we wait....and wait...and wait... Finally at 3:20ish I mentioned calling Jan from impatient that normally does the lumbars on James. So he pages her and she says she is on her way! Well when she arrived, so did Ms. Darling! LOL SO James had 2! Jan tried on his back, but took several attempts at repositioning him, hitting a nerve and capillary, etc she was able to get it. His back is not ideal for lumbar punctures! LOL So he laid down at 3:55... now the 1hr wait started.. and we were planning to leave TX too! UGH!

So I went off to medical records to get his paperwork sent to KU med so they can observe him while we are home. The dr wants an oncologist to watch his blood, and so we have to get the local Med hospital/school all that stuff, then we can get a name for a dr, then we can have the PCP hopefully learn how to write a referral so then we can go to the med. Hows that for UGH! So I am still waiting, and will call tomorow to find out what's up!

Well the medical records lady was UGH to say the least! I had to ARGUE to get her to realize that my name was on the list to be seen by her to get the forms released! UGH! IGITS! So finally I got that done and was back with James, and we left at 4:55 and then got our prescription, and left. Stuck in traffic and finally at 7am we got home Friday!

So since that time, James had a bit of back pain, that has sense settled in his neck. It sounds most like a strained muscle, like that you get when you sleep wrong. Of course he can't take traditional muscle relaxers to help, so heating pads it is! No fever, and days 10-14 are highest and Monday started day 10. So far so good! I will call the med center tomorrow to see if they got the paperwork, and if we got a name, so I can go forward and get the PCP to learn how to write a referral. I also need to call the insurance company to see if they learned how to do the last, which I am assuming no since the explanation of benefits came in the mail, and still nada on the dr being covered! UGH!

Plus the neupogen shots are $11,771 a month and that isnt' being covered due to the referral not getting in! UGH! I am tired of imcompetant people! So that's the update. We are celebrating our two year anniversary today (the 7th) so hoping that it's uneventful! ;-)

Thursday, April 2, 2009

Nothing really new

Well we got out of the hospital on Tuesday morning. Yesterday was pretty much a get used to being out of hospital day! LOL He had the lumbar puncture on Monday with Jan again. She does GREAT and he requests her whenever he can! ;-)

Nothing really went on while at the hospital. Just the same ole, same ole. Blood work and pills.. Blood work and pills! LOL That is always good for a hospital! ;-)

Tomorrow (Thursday) he has another dr appt with Dr. Thomas, then is scheduled another lumbar puncture with chemo in the afternoon. We are HOPING to get it earlier so we can leave by noon, but we'll see. You just never know! So hopefully sometime Friday morning we will be home! :-) That's about all that is new at this point.

I did call the med center close to us today to see about an oncologist while we are back home. I have a whole list of things I have to get to them before we can see one to monitor him! UGH! Oh well! You do what you have to!

James also starts the Neupogen shots tomorrow. I'm sure he'll be glad about that! ;-) I think that is it! ;-)