Sunday, March 29, 2009
Anyway, we had appts on Thursday, 9:30am for Fast Trax lab, 9:45am for Chest X-ray (they HAD to have this before they could order Chemo for cycle 2), and then drs appt at 11:40.
Well we were advised to come early and we could get it all out of the way. So we came at 7:50, gave the blood, got the x-ray done, and left on the 9:30 shuttle! LOL We got back to the hotel and waited until we heard from the nurse, and came back around 11:50ish to meet with the dr. They said the results came back fast from the X-ray!
So the dr said everything looked good. James had a bit of swelling in his legs, and the dr said that it wasn't anything to worry about. He had a bit of a cough/drainage and the dr wasn't concerned as she thought he was almost over everything. His counts all looked good still, so that is good!
She did finally have the results back from the bone marrow aspirate from last Thursday. It still showed a touch (0.65% of total marrow) of leukmeia blasts. Obviously that is great it's so low, but not if we don't want it to come back. She said that we will test his aspirate again after this cycle is done. She said it doesn't surprise her because of the length of time he's had the disease.
She said that if there is still Leukemia cells hanging out after this cycle it's normally a predictor that the Leukemia will come back. So she reccomends a bone marrow transplant to give his body the extra UMPh to kick it for good! Prayers/Healing vibes that this happens! We would LOVE to not need a transplant at all since he is doing good so far!
He was supposed to get admitted THursday for the cycle to start. Wouldn't you know the hospital was full AGAIN! UGh! Finally he called Friday Night (they were supposed to call when a bed opened up) to see where he was on the list. They had JUST cleaned it! So we came up here on the 9:30 shuttle to stay. We are on the same floor again, and have had GREAT nurses! Thank goodness!
They started the fluids at 23:50 and then had to get his urine ph to 7.3, which was done by 2ish so at 4:30 they were able to start the Methotraxate. The first does was for 2 hours, then another that ran for 22. As of this am he is still on track of getting the mex through his system (they measure it in his blood, too much is horrid on kidneys and if that happens it delays everything else!). He is having good in/output and drinking tons of fluids to keep it flushed out!
His counts still look great! Yesterday morning his counts were: WBC- 3.0, Hemoglobbin-9.7, and Platelets 308. Today they were WBC-3.9, Hemoglobbin- 9.6, and Platelets 292. Hopefully his counts stay decent and that he doesn't get sick after this cycle!
So that is the update. We won't be home on the 1st like we had hoped, so HOPEFULLY on Thursday we will be able to leave after the dr appt! :-)
Saturday, March 21, 2009
We had our appt on Thursday. We had blood work, bone marrow aspirate at 9ish then our dr appt at 2:45!
Well the blood work was easy, and then the aspirate. James said that it hurt the worst that it's ever hurt as she had to go in twice and had to dig! :-( It was sore later too.
So we go back to the hotel and came back at 2, but didn't get seen until later. We got the results of his blood work. WBC- 3.5!! Hemoglobbin 8.7, and platelets in the 200s! This is all with out the neupogen, and on his own! His body is recovering.
She canceled his VFend, Avelox, Augmiten, and I think that was it?? Basically after Friday's final dose of Vancomycin in the morning, he only has 2 pills a day to take! :-)
Oh and the great news??? His total blast count is......4% which means he's in remission!!!!!!!!! Anything under 5% is remission and we are there! The dr was so excited and happy, which makes it better!
We also were able to go home for a few days. She said the Vancomycin is hard on the kidneys, and so are 2 of the chemo drugs for round 2 so she wants to give his kidneys a little break before starting round 2 which I am glad for! ;-) It's nice to be home for a few!
We go back Thursday to start round 2 and will be there for 5 days, pending no issues, then can come home. We need to get an oncologist while home to monitor his blood, as she said he'll need blood and platelets for sure. So I need to find us one of those! LOL
So that's the great news of the day! :-) Keep the prayers coming that he stays in remission and the Leukemia never learns how to come back!!
Wednesday, March 18, 2009
They also gave us his bone marrow aspirate results. They weren't great, but good! His blasts (the number of leukemia cells) were 85% when we started, and are now at 33%. Dr. Thomas said that it is still early and that the leukemia cells can die off in a matter of days. She would like for him to be in remission after cycle one (remission=less than 5% blasts). If he's not that's ok they will go on to cycle 2 with knowing he's not in remission!
Tomorrow we go back for labs, bone marrow aspirate, and then drs appt. We should find out then what his blasts are now, and where we go from here. We also were able to stop the Neupogen (the shot to increase blood count) and the Augmentin. (We found out the bug he had was actually Staph and that it is resistant to the Augmitten, but the Vancomycin is actually perfect for it!). So we are down a couple things, which is wonderful!!!
James also lost more hair today and was missing patches, so we went to a local barber shop and it is all gone! :-( He looks soooo different! Here is a new picture.
Tuesday, March 17, 2009
James was released from the hospital on Friday afternoon around 1:40. They sent us home with another prescription of an antibiotic and also for an IV one. They sent a home health nurse out later that evening to show how to do the iv. It's basically a ball with a line that you screw into the catheter! Sooooo simple! ;-)
The lady was impressed that I knew what I did! ;-) (There is the IV bottle, ignore James looking so thrilled! LOL) Both antibiotics are for 7 days, then he returns to the other antibiotic on previously (the Avelox). The new antibiotic pill is HUGE!!!! Oh my!!!
I was told Friday morning that I would HAVE to attend another dumb class. Well, thank goodness for the same great nurse, because we ordered the video to the room and "watched" it (ie it was on, I packed up! LOL) and then I did my demo at 10am. I passed and received supplies.. Well they didn't read the invoice right, so I have to go back Tomorrow and ask for more coverderm. Also if anyone has a good way to keep the dressing dry in the shower, please pass it on. We haven't gotten the hang of that yet!
James has been feeling really good. He has some diarrhea, but it's not all the time, and he's getting plenty of fluids in so I'm not worried. We'll learn tomorrow if all is good. He has an appt at 10 for blood, and we meet with the dr at 11:40. I hope to learn his aspirate results!! He has also started loosing his hair! :-( He doesn't seem too upset, just keeps rubbing his head! I told him to stop that as it looks like he just got a hair cut each time! ;-)
I think that is it. We've stayed in the hotel most of the weekend, because we don't need another week in the hospital!! Oh and my sister checked our mail at the house yesterday (well read what dad had checked). We got the first invoice from the first hospital stay and appts.. Before insurance.... almost 21,000!!! OH MY!!! Thank goodness for insurance!!
Thank you to everyone for everything and for your prayers. We couldn't be doing this without you!!
Thursday, March 12, 2009
The nurse today made me a deal too on those stupid classes. She said if I went to One, then she'd have them come tomorrow to sign me off so I get can the supplies, so I agreed. One class I could tolerate. UGH! That class was the stupidest waste of time I've ever dealt with! We get there and sign in. Then watch a movie from 2003/04 how to clean the catheter, change the caps, and flush the heparin. Mind you they had information on it that is no longer accurate and they also showed EVERY step. For example you have to use 5 swaps of alcohol, and 3 bedadine... Wouldn't you know the video showed you doing ALL of them even when it was the same thing? Igits!
They also didn't know about Hickman Catheters (big surprise there) and then the only thing they wanted to have us try was to flush the heparin through a fake catheter. Ummm.. that's not rocket science! So since the classes are identical that means 2 classes of watching the same dumb video, and then flushing the catheter... Whatever igits. I'm done with it and have my demo at 10am tomorrow! ;-)
James is feeling good, just tired of being in the hospital. I don't blame him!! He also got a med tonight that he shouldn't have, since it's a once a day pill and they gave it to him this am. The nurse acted like I was stupid, but I know what he takes and when. She didn't think he had it this am! UGH!!! At least it's not one that will hurt him, but seriously!! Can't you count??
James also had his first bone marrow aspirate done today. Hopefully we get told the results so we know how well the chemo is attacking the leukemia cells. So that is about it I guess! Nothing really exciting I guess! LOL
Wednesday, March 11, 2009
So we went downstairs to the ER. We were brought back to the room, and the male nurse told James to pee in the cup and the bathroom was across the hall. He got dressed into the gown and got settled as we met our nurse. She was really nice and got him started on IV fluids.. the whole big bag was to be pumped through in 1 hr! Oh my!!
So he got blood draws for cultures (from the catheter and arm), urintated in the cup, and had a chest X-Ray. We met with Dr. Rice and she prescribed Merram and Vancomyicin for the fever. Later that day we got a different nurse.. And lets just say she wasn't the best. UGh! In the afternoon PA Foth came in and said that James has a touch of pneumonia in his left lung.
They said that James caught it really early, and they should be able to knock it out. They also started 2 pints of blood. PA Foth said that they were watching the cultures for 48 hrs to make sure nothing grows, and that when James doesn't run a fever for 24 hrs we would get discharged.
Mind you during this time a Nurse's Assistant was being a total Butt! She had issues with the staff bathroom (the one we were told to use!) being left open. At one time James went to the Restroom and was going to use the patient one, but the igit from last week went in, so James used the staff one. The lady threw a fit that patients were using it! UGH!
I left for a few hours (from 5:40-8pm to get things from the hotel since we knew we'd be in the hospital for 24-48hrs plus). When I got back the urinal wasn't dumped, and was still on the bed side table (he had been hooked up to pulse-ox monitor (which was on the wall) on one side and the IV on the other so was bed ridden during this time). He also STILL hadn't gotten anything to eat! He buzzed the nurse at 6:30 asking if he was going to eat! She knew she messed up! She finally got the kitchen to bring up a menu. They dropped it off and asked if he knew how to call it out. WHen he said yes, they started to walk out. Mind you the phone was clear across the room!! He asked then how was he supposed to call? THey then put the phone on his bed! It was irritating to me to have all of this happen!
We were still there when 3rd shift came in. Thank goodness! We had a nurse's assistant named Glynn that was AMAZING!!! He was so sweet and went above and beyond what was expected! We finally were brought to our room at 2:15 this morning! UGh! We had some great nurses up here, thank goodness!
This morning James talked with our Patient Care Advocate. He mentioned waht all happened yesterday and last week. She said that we don't have to ever deal with the igit from last week! She said she'd also talk to the nurse manager about the CNA from yesterday.
The Administrator of the Emergency Center came up to talk to us today! We were surprised! She was super nice and thought that what she did was ridiculous!!! She said she would take care of it, and was sorry. We told her how pleased we were with Glynn and she said that she was going to make sure that they recognized him for it! I really hope they do!
So for now we are on the the actual Leukemia floor and have had great care already! We are very happy so far! ;-) James is doing well and hasn't run fever since yesterday morning at 9am, so hopefully we get out tomorrow! Prayers are muchly appreciated at this time!!! Thank you!!!
Monday, March 9, 2009
Then we got back to the hotel and our meds were in!! So we finally got them and put them in the fridge. I started then and have continued to give him shots. He said I'm getting better! ;-)
Over the weekend, he's done really good!! Tomorrow we start the decadron and have a blood draw and drs appt! I also changed out the duaderm (as it was Blech) and put a huge bandaid over it. It should work just as well, so we shall see! ;-) i'm sure MD ANderson won't like it, but they can get over it. If it's supposed to be covered, and they won't give supplies, then we will do it our way! :-)
Friday, March 6, 2009
Then we went in this Am and got our shot and left. That was it. This weekend we have blood draw tomorrow, and then the Neupogen too if we don't get it tomorrow like we were called today and said it should be here. Sunday another shot, and same Monday. Tuesday another Blood Draw and talk with dr. We also start the Decadron on Tuesday.. I believe..Will have to check the notes! ;-)
That's been about the most of it. James has a film in his mouth that doesn't allow him to fully taste his food. The stomach thing is gone, and that's about it. He is more irritable, so that is to be understood. So that's where we are at!
Oh.. and our Friends from Michigan.. Please defiantely keep them in your prayers. His Cancer is back and has other issues too! They defiantely need them!! Thank you!!
OK.. so we got out of the hospital Wednesday. I forgot to mention Tuesday the Pharmacist came by and gave me a number to call the mail order pharmacy so we can get the Neupogen shots (as thats how they make us get them) so we can do them at home. The Neupogen is to help increase his white counts. He is considered Neutropenic, which basically means very suspectible to illness.
Well.. That was a headache in and of itsself! UGh! Finally the lady said when we get a long-term addy (that we'll be at within the next week) to call them back. So I called Wednesday and got transferred 3 times! The people were irritating! They said they had to have a drs' prior authorization! WTH! They called it in, so why did they need that??
Then they said that once that was done then they'd send it out. I was told the day before all they needed was an addy and it'd be overnighted the next day! UGh!
They have him on a non-fresh fruit/veggie diet. They said it's because of the bacteria on the foods. The dr told us to use the rules for Mexico. If you can peel it, then ok.. So like Oranges, Banannas, etc are good. If they are cooked/frozen/canned (from a store) they are good. Apples, grapes, etc bad. You contaminate the fruit as you cut it so no go!
Then Thursday we had some appts. He had labs at 8:30, shot at 9:30, Dr.'s appt at 10:40, spinal chemo at 1:30. Well we did the blood... waiting until 10:15 for the shot.. then about 10:50/11:am for the dr's appt. I really like our dr. We discussed the stomach thing so she upped his protonix to protect his stomach to 2x daily, instead of one.
Then discussed diet, plans, etc. After that we did lunch, then got our Heprin prescription picked up (and it was $0!!) and then went for the spinal chemo, like what was done Monday! That was an hr wait! :-( Well we go back to a room, and the lady that did the vitals was an IGiT!!! I asked for sure what the game plan was as she was acting like it was something else.
Then we were sent to a room and the lady was making the bed, and told me to wait in the hall.. she'd get me when done. Whatever lady! Then James and I went into the room. The Leukemia PA (one of them!) Adrian came in. He talked about what was happening and the nurse came in with an IV. I asked what she was doing and said she was hooking up the adavan (sp!). Ummm, why??
She said it would help him.. No thanks, we opted for none before, so don't need it now. So she acted like I had hurt her feeligns but left. Adrian talked somemore and then went to get the supplies and such (after the numbing cream went on). He came back around 2:15 and set up to do the spinal (aka Lumbar puncture). He took time to figure out where to go. I had told him that the previous time they tried going in one spot but that didn't work and she had to go lower.
Well he tried 3 times in the upper area (The L4/L5) and was unsucessful so had to go get more lidacain. That seemed to take forever. James was getting REALLY aggitated by this point! Then he brought in another person that is supposed to be really good at it. They went in the L5/S1 area and was able to get it. He checked the fluid and it looked good again, and inserted the chemo. Then James laid down for 45 minutes.
Finally the nurse came in and we were able to leave. So we went to Infusion Therapy to get his Duaderm changed. He get Hector or Franco something like that. UGH!! He takes off the dressing and says "You don't have sutures.. Oh... You have to have sutures... Have you had your dressing chenged here?" Ummm yeah.. this is our 4th one here. It's already been checked via x-ray and dressed. It's a hickman catheter.. There is a cuff under the skin keeping it in place igit!
So he says he must go talk to his charge nurse. He comes back and says that it should have the sutures to keep in place. He says he can do it right there. Umm.. NO!!! It's not moved/come out. It has a cuff keeping it in place, and the sutures have already been removed by the VA.. we're not getting new ones. So then he decides to talk to James about the War.
Umm.. what igit asks a Veteran, especially one with PTSD, if they saw suicide bombers/people killing people? You DON"T do that! UGH!!! Then he asks how the "Man's life" is there. James didn't understand him and asked what he meant.. He said "The man's life.. I can't say more because your wife is here". If you can't say more because the wife is in the room, then you shouldn't be asking it in the first place!
This igit also said he remembered James. Umm.. no we've never seen you before. He asked if I'd always been with him, and I said yes. He said, oh it was with another woman. Umm. I've been with James everytime, so NO, it wasn't you!
So finally we left for the day.. UGh! Pt. 3 next.
So Monday he continued his treatment. He had to get out and walk around. So we did that. Well one of the bags on the IV decided to start beeping, so one nurse tried to silent it.. Well she did something and it drained all power in 30 seconds! So we went back to the room.
For the rest of the day it was about the same. They did start another med that night and he started getting an odd feeling in his stomach! So we talked to the nurse and they started another med to help with that!
That was Monday! On Tuesday they started the Doxi chemo. It looked like red kool-aid! So weird!! They checked his blood numbers. His hemoglobbin was only 8.9 so they gave him another bag of blood that afternoon. They gave him the tylenol and benedryl to help his body accept the blood... Well of course that knocks James out.
So wouldn't you know that's when every dr/nurse decides to make their visits? Every 5-10 min it seemed like a new dr/nurse was in the room wanting vitals check, blood sugar check, hows the tummy, etc. WTH people! Let him sleep!!!!! Finally they all left and he was awake.
Frustrated, but what do you do?? The red kool-aid stuff made him feel odd, but he did really good with it! It went in for 24hrs (actually a bit more, but oh well!). He didn't ever throw up but did have swelling! He looked like he gained like 20 pounds!! UGh!!!
Then Wednesday... At about 5:40am a lady came in to draw blood and she wanted to poke him. He told her no, you have a drs order to get it out of the catheter. She kept trying to fight him on it, but finally shut up. The blood was taken out of the catheter. Come to find out she wanted to leave by 6 so she was taking the other route! UGh!
Finally he was released about 1:30/2 pm ish. This was after Col. and his wife came by. He was doing some lectures in the area at one of the hospitals and came by. He looked over the notes and such and got an idea about what went on (By the way for those that don't know, he's an actual Dr, so he knows what's he's reading! LOL)
So they drove us back to the hotel, where we are still at.
Sunday, March 1, 2009
He also had his spinal tap done around 1:45 today. The lady drew some spinal fluid which was clear (a good sign she said) and it looks like water!! Then added in the bit of chemo because they are trying to prevent the leukemia from getting to his brain!
Otherwise, not much to report. He has the hiccups which they say is a side effect (and supposedly it's a form of neaseua) so they are supposed to be bringning in some meds to comabt that.
Oh and on a funny note... We found out the floor we're on is the gyno floor! LOL So James is hanging out on a floor of women! ;-)