Monday, July 20, 2009
Friday, May 22, 2009
The funeral will be on Tuesday at 1:30pm. He is going to have the full military honors, like he deserves. I am beyond happy that it will be done. There is so much to do. I just don't know... :-(
I know that you all are here for me and I really appreciate it! Thank you again.
We completed cycle 4 and headed back to Kansas. We arrived home early Wednesday morning. The drs had started him on a new anitbiotic and as of Thursday (while in the hospital) he started gettting severe diarhea. Of course the drs didn't think it was it but the chemo. Yet this didn't occur cycle 2.. hmm...
Anyway. On Thursday morning (the 21st) I left for Topeka. Then I got back quarter to 5. James wasn't feeling the best and had had an accident. I helped clean him up and tried to get food in him. Well needless to say he said something about can't swallow then made some funny looks. I called 911 and they arrived within minutes. They started working on him.. They brought him to St. Johns, and he was pronouced dead at 6:10 pm. :-( So James is no longer suffering, but is deeply missed by all that knew him. I know he knows that I love him with all my heart and it saddens me to update this. :-( The funeral arrangements are pending, but will probably be Tuesday.
Sunday, May 10, 2009
We left Houston the 28th. We stayed with Friends the weekend after leaving the hospital and then came back on the 27th so we could stick around for a bag of chemo that was less than 20 minutes long! UGh! He also had a bag of antibiotics and was started on 2 more. The dr believed he had C-Diff and wanted to combat it!!! So we got those and left!
When we came back to Houston that monday the weather was crazy and raining! It ended up flooding that night and on Tuesday morning! On the way out of Houston we saw a lot of the flooding, drove through some water and saw a guy get rescued from the water! So weird!
We got home really late but it was SOOO good to be home! While home James held up pretty well, again had the sour mood, and ended up with bad diarhea. He was using the bathroom many times a day! It pretty much wore him out which makes sense!
We FINALLY got into the VA this past Friday. All of his levels wer ok, but his WBC is 28.6. It's high but nothing like last time! I only did the neupogen for about 8 days so that is crazy! At least I didn't keep it up! LOL He is feeling better, but today his ankles are really swollen. If he'd only learn to not overdo it! ;-) So we are headed out to Houston in the morning and then will be there for hopefully only a week then come back home. He is supposed to have blood draw, dr appt then admittance! We'll see on the last! LOL
So that is the long overdue update! :-)
Wednesday, April 22, 2009
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
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
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
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 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! ;-)
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! ;-)
Saturday, February 28, 2009
So we got there around 2pm. We were there until 3:20 when they brought us back. They did his vitals, and then brought us in for the blood. They started it at 5ish after giving benadryl and tylenol first. At close to 7 we got a call from admissions that we got a bed finally!
So we left at close to 7:30 and came to the main building. We got checked in and sent to our floor. We get here and there was no bed in the room!! So finally we got a bed around 8:15ish. They of course freaked that his catheter wasn't dressed and then took his blood. They also hooked him up with a dressing then with regular fluids.
They had to wait until after midnight before they got the results of the blood tests (as they wanted to make sure his hemoglobbin was up before chemo.) They were only at an 8, so he got 2 units of blood around 2 am. At 5:25 we started the chemo.
James said if not for the tubes he wouldn't even know he was getting treatment! Thank goodness! Please pray that continues! THey showed us his blood work after this am and his hemoglobbin was at 10.3! :-) That is really good (considering!). Still plan on 4ish days in the hospital, so we'll see how that goes! So that's the latest!
Friday, February 27, 2009
We got to TX at 1:45am. Yesterday we were supposed to get admitted to the hospital. We were told to be there at 9 am for blood draws then go meet with the dr. Well finally we met the dr at 12:30! We had spoken with admissions Wednesday to get preadmitted, then to call back yesterday morning.
When I called they said expect to be waiting until late afternoon. When we saw the dr she said the same but was a bit concerned with his hemoglobbin levels being low. They were 7.3 or 7.5 can't remember. Since he wasn't having symptoms of being low she said we'd be ok but wanted to probably give him a unit of blood sometime yesterday or today if he didn't get admitted.
Well we waited around until almost 4pm and James called the admissions people back. They said they were so full that to go back to the hotel and wait for them to call. So we did. On the way to the hotel the drs office called to say that we wouldn't get admitted yesterday, more likely today and that they wanted to give him some blood. So today sometime (waiting on the call of when) we will get blood, and might get a hospital room too.
So we wait.
Oh and the couple we met from Michigan? We saw them again. Keep them in your P&PT if you can! They got some news and are trying to get answers. They are so sweet and we wish them all the best!!!
Saturday, February 21, 2009
So I guess I left off Tuesday with that appt. Wednesday we had nothing going on so we relaxed the day away! Then Thursday we had to be there at 8:15 for lab, then the appt at 11, then echo at 3. Well they said we'd do lab then ecko then dr appt. Well the echo lab was backed up so we sat an waited, and waited and waited. Were told to come back at 11:30 and they'd work us in. Finally around 1 we were worked in!
So we get the ecko done, then have to wait until around 3 to see the dr! Talk about waiting!! So we finally got in to see the dr. We first saw Dr. Tong (with a T as he said! LOL) and discussed briefly the bone marrow biopsy results. They have determined he has ALL and doesn't have the Philidelphia Chromosome nor the T Cell which is a good thing!! So it's straight up Chemo for him.
Then Dr. D. T. comes in and starts talking about admitting him that day! We had to come home first because they told us only outpatient, so we have to get his insurance stuff figured out, someone to watch the house, etc! Plus we were told we have to talk to business office prior to chemo or any other steps that are different to make sure insurance pays for it.
So they send us there at 4:49 pm and you know nothing gets done that late at night! So we were told they would call us the next morning... So Friday we got up and around and got to the hospital a bit after 10, after getting NO phone calls. UGh!
We go to Leukemia Clinic and ask to talk to the nurse to get the papers back that weren't the right ones for them? Then ask about the business office, and the tegaderm that has irritated James' skin and caused blisters! Oh my! So they said business office would call us when they were ready and that we could go to infusion therapy to get different covering.
While there I got a call back from the social worker to see about cheap (LOL) housing! Well she said to meet her next door to where we were when done. Well the dressing change also turned into caps change and flushing. They won't send home more dressing changes for me, because I haven't taken their classes to do it. Whatever, I've been doing the stuff since January, still not keen on taking their stupid classes for something I already know how to do! We'll see if I end up taking the classes! ;-)
So we go to Social work, and our worker had an emergency so told to come back at 1pm (it was 12:20 then). We got lunch and came back and waited a bit more. Finally we met the social worker. She is really nice. She gave us a list of the housing choices (which aren't that cheap!!) and talked about what they can do for us. I also told her about his PTSD which they were glad to know about.
So then we went back to the clinic got the prescription for the heprin (as I'm almost out!) and talked to business office who said they had it all straigtened out for admitance that day (umm who said today??). We finally got them to do Thursday next week and that's that. So we went back to the hotel and checked out and at 4:15 this am we got home. So that's our plan!
Oh about the treatment (sorry this is a novel!!). It will be 8 cycles of inclusion therapy. Odd cycles will be Hyper CVAD, and the evens will be a different type of meds. The odds are 5 meds that he will take through IV. On certain days they will also draw spinal fluid (spinal tap) and give small dose of the 2nd type of meds through his spinal column. They will also do 2 bone marrow aspirates in Cycle 1, on days 14 and 21. They said they expect a 90% remission rate after cycle 1, with a 95% success rate after all of it!
Cycle 1 we have to stay in the Houston area. Then the others we can just travel. Then after the first 8 cycles, we will start maintaince Chemo for the next 30 months (2.5 years). They think he will recover after each cycle well, and probably won't need a transplant!!! WOOHOO!!! So that's the game plan! Thank you all for your prayers and thoughts! They mean the world to us!!
Tuesday, February 17, 2009
After talking with Lee (the male nurse! :-) ) we were taken down to the fast track lab. We met a really nice lady, but I didn't catch her name! LOL So James went in and had his blood drawn (15 tubes!!) and I met a really sweet breast cancer survivor and her mom! They were so sweet! From there we went to the bone marrow biopsy lab and got signed in, then brought downstairs to the chest x-ray. (We were told it would be 1.5 hrs wait for the biopsy, so be back in one hr).
So he did the X-ray and got his pic taken for their files, and we went to brunch/late breakfast. We had a good chat then went back to the biopsy lab as the hr was almost up. 2 hrs later, he went in for his biopsy! He was out quickly and the guy was really nice and said James has strong bones! We met a nice couple from Michigan there, and got along well! We are staying at the same hotel and will be exchanging numbers before they leave.
From there we went downstairs and got a drink and relaxed for a few. We then went back to the Leukemia clinic and watched the fish in the tank fight each other while we waited on the dr! (Mind you it was now around 2:15ish and our appt was 4pm, but we thought we would get in early). We finally were seen around 4:30!
We really liked the dr. She is very smart but talks to you so that you understand! She also answered all my questions and more, and we have business cards to contact people if needed! She said that she can't predict what our treatment plan will be until after she gets the results of the biopsy back. We go back on Thursday to discuss what Leukemia he has (finally!!!), what the game plan is, and some more information.
She said that I will get too much information and won't remember it all, but that we'll be discussing it a lot so I'll catch it. She said that the fact his platelets look really good that he *should* recover quickly from the Chemo. Oh did I mention that we were told to be here 3-5 business days, but now he might get admitted on Thursday to start Chemo! Oh my! We're ready to get the show on the road though, so we'll go with it.
We finally left the hospital at 6:15 pm (we stayed a bit later waiting on an antibiotic that she prescribed for him that he'll take after started the chemo to help fight infection). So that was today, and we go back Thursday, so we have tomorrow to chill, maybe! :-)
Monday, February 16, 2009
We are in Houston not far from the hospital. We drove by it today to see where it was! It's huge, just like I thought! We left Sunday night at about 7:45 and arrived this am at 9:15 in Houston. (We were going to spend the night in OK, but kept going! LOL)
We actually ended up at the wrong hotel, but closer to the hospital. They honored the other price and set us up here, so it's good! We could walk to the hospital if we'd like! We have our appt tomorrow morning at 8am, bt have to be there at 7:30. I will update tomorrow night! :-)
Monday, February 9, 2009
We saw Marlene shortly and talked to her. She got us more heprin and saline and caps. She also got the kit out and removed the stitches holding the catheter in place while the skin got the cuff of it held in place so it wouldn't slip. It took a minute to remove as some of the stiches had tried to grow into the skin!! After they were removed, James said he immediately felt like pressure was released! Who would have thought?
We talked with her some more and told her our plans for TX. After we left, we got a phone call from Lucresha. She gave me a list of things needed to bring with us, hotel information, etc. So we ate lunch with my dad and went back to the VA. We needed to get the glass slides from the bone marrow biopsy or would have to do it again!
Marlene called and then brought us to Release of information. That lady.. my! She said we couldn't hand carry the slides, although Marlene said we could! I told her to call Marlene, but she insisted she was going to talk to the lab person! WTH! So finally the lab person said we could but then this lady said we shouldn't! So the lab lady came down and talked to us. She was such a sweetheart!!
She said that she was Fed Ex'ing the slides and ALL of the reports they have down there! WooHoo!! She is making sure they will get everything they have! I think that will be great so they will have all of the information and can examine it all before we get there! :-) That should be a good thing!!
So I think that is it for now! :-)
Sunday, February 8, 2009
Well Thursday I got a call from MD Anderson that they needed more lab reports faxed! UGH! So I went and faxed the last 2 I have copies of. I figured we'd have to wait until Monday to hear more..
Well, wouldn't you know I got a call Friday at 4:15! WooHoo! She said that James has been medically accepted at MD Anderson and that Dr. Thomas will be our dr!! She gave me some lists of dates for us to choose from to go for our appt. We will be going 1-2 weeks from now!
I should hear more next week about what all will happen. We will have to be there for 3-5 business days as an outpatient. From there, I don't know yet. I just know that this feels so wonderful. We are still scheduled for Monday at the original VA so we'll see!
So that's the update! :-) When I know more I'll post again! :-)
Wednesday, February 4, 2009
Lets see... I called the next day to see if the referral had been sent, and MD Anderson said they hadn't received it! I then called the drs office and the lady said that there was only one lady that can fax referrals (UGH!) and that she wasn't in the office but could send me to her voicemail, so I did.
Well I left MY name and number and they called James back around 7 pm! WTH! Anyway she said is this for Dr. Anderson? Umm no lady!! It's MD Anderson, the cancer treatment facility!! UGh! She said oh!! I'll send it first thing in the morning!
So I waited until Monday to see what had happened. The lady we've been talking to at MD Anderson wasn't in.. Today James called and spoke with her. She said they received the referral and she has sent it off to the nurses and they will pick a dr! She said we should hear back from them soon!!!
Hopefully we hear back tomorrow and learn our plan of action! Also talked with the original VA. We have an appt on Monday at 9am to get his stitches removed from getting his Hickman Cathater placed! So that is the plan of attack! :-)
James is also celebrating his 57th birthday today! WooHoo! ;-) Hopefully this year is full of good news for him!
Wednesday, January 28, 2009
I had brought our drs notes with us with CBCs, biopsy notes, etc. I then tell him who we've been talking with and gave her phone number and fax number. The dr said that they would fax off the referral today! WooHoo! I hope it works! :-)
So I am going to call tomorrow to see if they received it and what is our next steps! So that is the update for now! :-)
So we finally find a dr here in town. James calls them and gets an appointment. Only we have to have our cards! Well, supposedly they were sent on the 16th and we still haven't gotten them! Then we find out that they won't be good as we have to have cards with the PCM to be good! WTH! So the ones we get will be trash.. Thanks!
So we call to have the Insurance people fax information to the drs office. Well the insurance people won't fax confirmation, said to have the drs office call them. Call the drs office to learn that they won't call! UGH!! So finally the drs office lets James talk to billing who called the insurance people and have the information.
So all of that for our appt Wednesday morning at 11am. Let's hope we get the referral. I did fax the information to MD Anderson, so we'll see! This is too UGH!!
As far as how is James doing.. He is great! He is holding up really good (besides frustrations!) and is staying fairly healthy! He and I are both ready to get done with treatment, but we'll hopefully be able to get the ball rolling in the morning! I think that's it for now! :-)
Friday, January 16, 2009
James says he feels a lot better now, so that is really good! :-) We also talked to his superior HR person about the insurance. For some reason it's not going through, so they are having high level people work on it and we should have something Monday. I really hope so! :-)
Oh, and we saw Dr. Stone today too. He looked at both spots and thinks they look good. He said that if we need anything else, let him know! We also got the forms we need to fax to MD Anderson so that is good! Now to fax them and send the policy number, and we should be good! ;-)
I think that it all at this time. Thanks again for all the prayers and postive thoughts! I really believe they are helping! :-)
Tuesday, January 13, 2009
He called the benefits people today. They said the paperwork hasn't been pushed through and they aren't sure why! :-( We should have already had the cards! So he told them we have some medical things going on, so they are supposed to be making it urgent which will still take 48 hours! UGh!
Otherwise things are about the same. He's feeling a bit better, but still weaker than before the diagnosis. This weather isnt' helping, but what do you do in Kansas, right? LOL Thats all for now I think! LOL
Sunday, January 11, 2009
We got back there and at first they weren't sure what they were supposed to be flushing. I explained it to them and told them it needed a regular saline flush and what the catheter was. They then understood and took care of it.
I asked about the bandages since we had ran out of the clear things that go over it (tanagarm or something like that). They then cleaned the area around where the tube goes in and put on a fresh dressing.
James later said it felt like fire ants around it! :-( Poor guy! I felt bad for him! I noticed later there was a bit of blood so maybe that on top of the cleaning stuff felt that way? Not sure. He said it stopped.
Then he has been feeling really tired tonight! :-( I hope he will be felling better and have energy! I need to call the benefits place tomorrow to see if we can get to MD Anderson! I really hope it works out! I'll update tomorrow probably!
Friday, January 9, 2009
I finally heard back from MD Anderson. I am supposed to call our insurance to make sure they will allow us out of state, and the paperwork will start rolling! I hope it goes through!
Then the VA called too. They were talking about flushing the catheter. I had asked at the time of insertion and they said once we started treatment it'd get flushed. Well our nurse believes it needs flushed daily so she's investigating and will call us back. I should know something soon.
Did I mention the email sent by a lady at the VA? I still don't know who she is which is probably good. Otherwise she'd hear a thing or two from me. She said that I said we were waiting and Jerkwad thinks we need to do the treatment, so we need to. It'd be nice to know who she is if she's gonna be sending stuff like that out! IGITS! ;-)
Otherwise, same old same old, which is good. The bleeding around the catheter has slowed down/stopped now. Not that it was ever gushing, but you know. That is a good thing. i'm not having to change the dressings twice a day which is nice!
I will let you know when I know more. Right now it's limbo!
Tuesday, January 6, 2009
I changed his dressing last night because I could see some of the blood from the procedure, and he was uncomfortable so we thought we'd fix it up. The 3 tubes that pertrude that the nurse had taped to his chest actually had had the main tube bent and I think it was pulling. Once I realsed the tape, he already felt some comfort! Thank goodness! ;-) So I got him all cleaned up and put to bed. That was interesting! It took him quite a bit before he got comfy, but finally was able to sleep after a couple adjustments!
This morning he was just a bit tender but not too bad. So I bagged him up with sandwhich bags for his shower. Then cleaned up the sites again! The lower one had bleed again, but seems to do that whenever the tube is slightly moved. Hopefully that stops soon (although the bleeding is really minimal, we would rather none!). He was feeling good for most of the morning too, and best on the road to the VA for the dreaded appt.
Well, we were running behind, and not minding at all, so got to our 11:20 appt at 11:40! ;-) James gave his vitals and they were great! The nurse and his co-workers all keep saying how he doesn't look sickly at all!! Well 55 minutes later we got called to our room to visit with dr!
Well we were placed in the room across from where the drs hang out (and this room was MUCH better than the last one.). We were hoping to see Dr. S to talk to him and I saw him walk by. He then saw me and waved and shortly came in! It turns out Jerkwad got sick and went home early (Darn it! ;-) ) and so Dr. S was taking his place! WOOHOO!!
So I told him I had done the patient self referral to MD Anderson and was waiting to hear back. He KNOWS how I feel about Jerkwad and completely understands and thinks good things about my plans! LOL He said that if I wanted him to he could call them and try to get things rolling! I said "Please!"! LOL He said that he'd call today and get back to me tonight! I can't wait for that phone call! Needless to say James is ready to start treatment Monday and we're hoping to hear back about MD And. and get him there by then!
Hopefully it all works out! ;-) Dr. S is so understanding and keeps things in good perspective! We couldn't have asked for a better person to talk with! Oh, and while in the appt MD Anderson called. Of course we didn't get the message until we left the hospital since our phones had to be shut off! Blech! We called her back and just waiting to hear. When I hear something I'll be sure to let you all know!
Thanks again for all the support, prayers, thoughts, etc. I really believe they are working for us and will continue to do so! Thanks again! ;-)
Monday, January 5, 2009
While in the waiting room we talked with several nice couples. On the elevator ride up a patient was there. I asked her how her treatment was and such and see said the nurses are nice but they make a lot of mistakes! Oh my! That right there secured my belief that we should be treated elsewhere!
James went at about 1:30pm to get the IV in before hand. The lady couldn't get the IV in his hand so did it in his right elbow area. She said he was scarred up there?? Whatever! LOL He came back to get me and we went to the next waiting area.
The dr came back and got us and explained the procedure to us. Basically they numb up the area where they are working and then insert the catheter through the vein that runs from your neck to the top of your heart. He explained the possible complications from it, but said "Knock on wood I haven't had that happen and I've done it for a long time." That was reasurring to a degree! ;-)
Then they brought him in to do the procedure which would take about 30 minutes. That was at about 2:05. At about 2:45/2:50 they wheeled him out and brought us to recovery. The ladies there were really nice and talked to us. I was supposed to leave after they got him situated, but the lady let me stay! We had to stay for an hour, then they would let him go.
We let right at 4pm and came home. James is in a bit of discomfort and feels like a freak, but otherwise is good. We were told he could take extra strength tylenol for pain, so he is. He can't get the sites wet, and they gave me more bandages for it. The staff today were really good!
Tomorrow we have an appt with Dr. Jerkwad that our original VA set up. I keep trying to get James to reschedule it until after we hear from MD Anderson this week, but he hasn't yet. Please pray I don't get arrested tomorrow for punching out a dr! ;-) James is ready to put him in his place! I think that is really it at this time! I will update again tomorrow! :-) Thank you everyone for your support! It's much appreciated!
Saturday, January 3, 2009
So on Friday I got a phone call from the VA. The lady asked if we had the tube. Of course I explained we didn't and why we didn't (which I didn't know we were supposed to pick it up, Thanks James! LOL). Then I asked her if she knew what the appt. on Tuesday was that the automated message told me. We didn't schedule one with them so I wasn't sure.
She looked it up and said it was with Dr. Jerkwad. UGH! I asked if she knew what it was about and she connected me to another office while she looked into the tube issue. I talked to a lady that was so oblivious to anything! I asked her what the appt was for and she said she didn't know but we were meeting with the dr. I get this, but what for, is there anything going to be done? She said "We're just a clinic, we don't do anything here." UGh! Stupid people. Didn't get anywhere with her.
The first lady called me back and we talked for a bit. The dr that diagnosed us was at our old VA so he is supposed to bring the tube with him on Monday. If she doesn't receive the tube, she will call me. IF I don't hear from here, she left me here number to call her! Nice lady! When I told her what the lady said about the other appt and why I didn't like that dr, she completely understood! She said that she wouldn't either and he should answer me! She also gave me a name of another dr that we might ask for or told us to demand we get to use our original dr istead of this other one! Glad I'm not alone on this!
In other news, I sent a patient referral self form to MD Anderson in Houston, TX. I am hoping they are able to let us go there instead so we don't deal with dr. Jerkwad EVER again! ;-) Also James is now retired from the military! It's a whole new year of lots of changes! I think that is it for now! I will update as I get more information! :-)