Wednesday, March 31, 2010
March 31, 2010 Check up and WBC rocking!
Aj went to see Lisa today and his WBC is a whopping 20!!!! weight 165lbs and looking great!
The head ache is still there and Lisa said that its not normal for Lymphoma to give head ache. It could be that some spinal fluid leaked when they gave the first spinal tap chemo. - to me that seems odd because it was two weeks prior to the head ache starting.
But to be on the safe side, she has sent him to do an MRI tomorrow just to see if there is anything they can see.
He's gone out with Ronnie for drinks tonight, not sure if he is going to drink, but at least he is out and about :)
The head ache is still there and Lisa said that its not normal for Lymphoma to give head ache. It could be that some spinal fluid leaked when they gave the first spinal tap chemo. - to me that seems odd because it was two weeks prior to the head ache starting.
But to be on the safe side, she has sent him to do an MRI tomorrow just to see if there is anything they can see.
He's gone out with Ronnie for drinks tonight, not sure if he is going to drink, but at least he is out and about :)
Tuesday, March 30, 2010
March 30, 2010 - Neulasta kicking in
Aj & Ronnie were hanging with Baby O all morning today since I had the pleasure to go and hang out with the dentist. This is just plain torture for me, I walk out of there exhausted because I am so stressed out when I am there. I was lucky to get a really cool one that I will not change. Now I am sitting here with toothache in a completely different place than where he worked... weird... I dug in Aj's pill drawer and I am feeling quite jolly right now.
Aj is still going strong, such a trooper - I am so proud of him and he looks great. He is back up to 160 lbs. He looks phenomenal. The Neulasta has started giving him some soreness over his front ribs plus the head ache is still there. He is going in to see Lisa - Nurse practitioner tomorrow to see how the lab work looks.
Ok, pills are seriously kicking in now... ciao!
Aj is still going strong, such a trooper - I am so proud of him and he looks great. He is back up to 160 lbs. He looks phenomenal. The Neulasta has started giving him some soreness over his front ribs plus the head ache is still there. He is going in to see Lisa - Nurse practitioner tomorrow to see how the lab work looks.
Ok, pills are seriously kicking in now... ciao!
Monday, March 29, 2010
March 29, 2010
Monday again
Not much to tell today, Aj and Ronnie went out on the boat and chilled. Aj is up walking and moving around feeling better. One week left before we go to Houston.
There is still a minor head ache there but as so much Neulasta pain as before, not sure if its going to come or maybe stay away this time... :)
Not much to tell today, Aj and Ronnie went out on the boat and chilled. Aj is up walking and moving around feeling better. One week left before we go to Houston.
There is still a minor head ache there but as so much Neulasta pain as before, not sure if its going to come or maybe stay away this time... :)
Sunday, March 28, 2010
March 28, 2010 Eric
We had a gorgeous day in Austin again, spring is just amazing here. Max & Ruby are singing really pretty and I think it was a good investment :)
The girls 'adopted' friend - Story had a sleep over last night, it was her first sleep over ever and she was a little anxious( she does spend a lot of time here so I see her as my adopted child). She came down a few times, stayed with me and then she said (at 1am) - I really want you to call my mom now so I can go home. I got up from her bed and told her, I'll be right back.... and went to my own bed and went to sleep. (hoping that she would fall asleep and forget...) an hour later - Chloe and Story are standing by my bed - Aj barks: That is enough go to sleep! And then we didn't see them again until this morning when they all woke up and played and laughed their heads off!
Then we spent the day at Story's parents house just hanging out in their back yard. Aj was out the whole day. Still some head ache, Chris suggested it could be allergies so he took a zyrtec when we got home (but didn't work)
When we had finished dinner the phone rang and I didn't know the number, picked up and its a guy who is called Eric. Last week I contacted MD Anderson's network department and asked if they could find me someone who has Aj's exact DX, they found one who had said it was ok to contact him. That was Eric!
He has exactly Aj's DX: Anaplastic Large Cell Lymphoma/ T Cell Lymphoma ALK +
We put him on speaker phone so we could both talk to him and it shows out that he has pretty much gone through what Aj has and is going through right now.
Eric is 26 years old, about 2 years ago he started getting fevers and took a few days off from work. (around Christmas) he then got worse and worse and ended up in Hospital St. Lukes in Houston. (he lives in Houston) They did a bunch of tests on him and his lymph nodes were swollen so they did a biopsy on one on his neck. It came back with lymphoma DX. That is about the only place where his disease is different than Aj's.. his were only in the lymph nodes. So his is a stage 3B - Aj is 4B, thanks to that Aj's is in the bone marrow. But both of them had the presentation of night sweats, fevers and being very very sick before which gives them the B after the number.
Stage I
Cancerous cells are found in only one lymph node group or one area outside of the lymphatic system
Stage II
Two lymph groups are affected on the same side of the diaphragm, or one lymph group and a nearby organ are affected.
Stage III
Lymph groups on both sides of the diaphragm are involved. Lymph cells may also have moved to one internal organ, such as the liver or lungs. Cells may also have metastasized to the spleen.
Stage IV
More than one organ is involved. Bone marrow may also be affected.
Eric was put on CHOP - originally planned for 8 treatments but he did so well that he only needed 6. He said that he felt sick for about 1.5 weeks after the Chop and then he got better and felt pretty good just before the next treatment. (just like Aj - we were sitting there just thinking - check had that, check done that, check - been through that. A lot of the things were the same) E also only got Neulasta once and he couldn't say why that was. His lab works were fine and he was doing well. He had a thought that maybe since Aj's is in the bone marrow they need to boost the bone marrow to produce more white blood cells to help fight it. Which sounds like a pretty reasonable thought. So back to E, he was in hospital for about 2.5 weeks when he got diagnosed because they also thought he had another infection in his body. He had a port put in (they have taken it out) and he got CHOP. One thing that he would get is vertigo - that when he has been sitting down and stands up, he would almost black out and fall over. It would be black in front of his eyes and he'd loose balance. He also had 2 blood transfusions (NOT TRANSPLANTS) during the time of treatment - fresh blood. Now he does CT and PET scans every 3 months to follow up and see that it hasn't come back, which he said is obviously very nerve wracking time. But so far so good!
He doesn't have any history of cancer in the family and can't possibly think of anything that could have caused him to get it. He was very healthy before and active, he said same thing as with our friends - they were chocked to find out about it because he was a healthy person. The cancer has now been in remission for 1.5 years and he has trained for triathlon after recovery. So he is feeling good and stronger.
Even though this is the same DX as Aj its slightly different because of how spread it is. But again - we have to look for positive things and if he had it in all of his lymph nodes, all over his body it was pretty spread on E and he had 6 treatments and then gone - that is really encouraging. E also said that he had heard someone say, "if someone was holding a gun to his head and told him, you need to pick a cancer to have. This would be the one to pick", because it has a very good outlook. That its aggressive only helps it to respond better to treatment. This is so encouraging to hear and to hear it directly from someone who has had it and is fine today. :) For sure that made me so happy today!
The girls 'adopted' friend - Story had a sleep over last night, it was her first sleep over ever and she was a little anxious( she does spend a lot of time here so I see her as my adopted child). She came down a few times, stayed with me and then she said (at 1am) - I really want you to call my mom now so I can go home. I got up from her bed and told her, I'll be right back.... and went to my own bed and went to sleep. (hoping that she would fall asleep and forget...) an hour later - Chloe and Story are standing by my bed - Aj barks: That is enough go to sleep! And then we didn't see them again until this morning when they all woke up and played and laughed their heads off!
Then we spent the day at Story's parents house just hanging out in their back yard. Aj was out the whole day. Still some head ache, Chris suggested it could be allergies so he took a zyrtec when we got home (but didn't work)
When we had finished dinner the phone rang and I didn't know the number, picked up and its a guy who is called Eric. Last week I contacted MD Anderson's network department and asked if they could find me someone who has Aj's exact DX, they found one who had said it was ok to contact him. That was Eric!
He has exactly Aj's DX: Anaplastic Large Cell Lymphoma/ T Cell Lymphoma ALK +
We put him on speaker phone so we could both talk to him and it shows out that he has pretty much gone through what Aj has and is going through right now.
Eric is 26 years old, about 2 years ago he started getting fevers and took a few days off from work. (around Christmas) he then got worse and worse and ended up in Hospital St. Lukes in Houston. (he lives in Houston) They did a bunch of tests on him and his lymph nodes were swollen so they did a biopsy on one on his neck. It came back with lymphoma DX. That is about the only place where his disease is different than Aj's.. his were only in the lymph nodes. So his is a stage 3B - Aj is 4B, thanks to that Aj's is in the bone marrow. But both of them had the presentation of night sweats, fevers and being very very sick before which gives them the B after the number.
Saturday, March 27, 2010
Meet Max & Ruby!
canaries :) one is adopted and I didn't have the heart to separate
them so we got the other one too!
Friday, March 26, 2010
March 26, 2010 Neulasta Day
Pretty mellow day today - Aj was awake a bit again last night, then I could hear the drawer with pills moving in the dark. Or maybe I dreamt that.. not sure.. He was sound asleep when I woke up anyway so he got some sleep.
He's feeling pretty much the same, a tiny bit of the head ache is still there. He forgot to tell Dr. H yesterday but he is going back next week for check up so he can mention it then.
In the afternoon he went for Neulasta shot and believe it or not.... I called the hospital today and asked them how on earth they could charge $12 000 for a shot that would cost $1500 at the Oncology office... the girl answered that it was how much they charged and that was it. I wasn't mean to her but I did question it and she didn't have anything really to say more than that is how it is. Tonight I was looking at an itemized bill from Dr. H's office - Neulasta shot $8000!!!!!!! I guess that their financial manager doesn't really know how much that shot cost (when he told me it was $1500) I can't believe it.
Seriously, its the smallest shot you have ever seen. Smaller than the shots they give newborn kids! I say like Christy said the other day - Mrs. Neulasta is VERY HAPPY, can only imagine what a collection of hand bags she has got :) !!!! Jesus - $8000-12 000 a pop !!!!!! That family hit the JACK POT!!!! That is THE most expensive part in the whole chemo treatment.
I think I need to call Jamie - the girl in the hospital on Monday and say sorry for questioning it. OOOuuuupsssss!
We watched Ice Age 3 again with the girls. Chloe is trying to be cool and say everything before they actually say it. So needless to say... we could barely hear a word they were saying in the movie, because little Miss C had verbal diarrhea!!! :)
He's feeling pretty much the same, a tiny bit of the head ache is still there. He forgot to tell Dr. H yesterday but he is going back next week for check up so he can mention it then.
In the afternoon he went for Neulasta shot and believe it or not.... I called the hospital today and asked them how on earth they could charge $12 000 for a shot that would cost $1500 at the Oncology office... the girl answered that it was how much they charged and that was it. I wasn't mean to her but I did question it and she didn't have anything really to say more than that is how it is. Tonight I was looking at an itemized bill from Dr. H's office - Neulasta shot $8000!!!!!!! I guess that their financial manager doesn't really know how much that shot cost (when he told me it was $1500) I can't believe it.
Seriously, its the smallest shot you have ever seen. Smaller than the shots they give newborn kids! I say like Christy said the other day - Mrs. Neulasta is VERY HAPPY, can only imagine what a collection of hand bags she has got :) !!!! Jesus - $8000-12 000 a pop !!!!!! That family hit the JACK POT!!!! That is THE most expensive part in the whole chemo treatment.
I think I need to call Jamie - the girl in the hospital on Monday and say sorry for questioning it. OOOuuuupsssss!
We watched Ice Age 3 again with the girls. Chloe is trying to be cool and say everything before they actually say it. So needless to say... we could barely hear a word they were saying in the movie, because little Miss C had verbal diarrhea!!! :)
Thursday, March 25, 2010
March 25, 2010 Evening
Yesterday Aj had CHOP @ Texas Oncology. Before that started he saw Dr. H (who is back from vacation now) and she said that the swelling in his armpit was gone, so can't really tell what it was. She suggested a PET and CT scan to be done. She also said that they could do the bone marrow biopsy here in Austin. I contacted Dr. F and asked him if he was ok with that. He would rather that they do the biopsy in Houston so we are still going down there. I think we are going to wait with the PET & CT scan until then as well - Dr. H wanted to see what Dr. F wanted to do first.
After the CHOP he came home and stayed in bed, after a couple of hours he felt a little nausea and took two pills for that and it went away. Aj stayed in bed all afternoon and evening and rested. During the night he had some trouble sleeping - one of chemo's side effects are - insomnia. Not sure what time he actually went to sleep but he was sound asleep when I got up this morning.
Then it was back to Seton today for injection. According to Aj - this one is easy :) They forgot to give him the steroids yesterday so we picked them up today - its the ones that he takes for 5 days after CHOP. It helps to fight side effects and makes him feel a little better.
Today he's been fine, after the injection he stays flat for a couple of hours so he doesn't get spinal head ache, which is supposed to be pretty bad. When I walked in to get him out of the post op room, I could hear someone talking very loud from way down the corridor. Shows out that its my dear hubby talking on Skype on his computer in the bed. There are quite a few post op rooms and they all just have curtains in the door ways. He was the annoying guy who was talking so loud, that everyone could hear him and the person he was talking to!!!! I should have complained to the nurses - he he he he.
Then home and rested in bed for the rest of the day. He feels 'toxic' again but no nausea or aching. The non aching part is to be pretty short lived though... going for Neulasta shot tomorrow. It wasn't as bad the 2nd time as the 1st time, so fingers crossed again that it won't be so painful this time.
I just got an EOB from insurance company that they had been billed from Seton North (which is where he had the last Neulasta shot since it was on a Saturday) I know for a fact this injection costs around $1200-1500. They had billed the insurance company $12 000!!!!! Excuse my language, but - F*****S!
I called the hospital and asked them what on earth they had billed for plus that they had again, sent the claim to the wrong place. The lady - Brenda, was being such a tart, so difficult. "Well.... you are confusing me, are you calling on behalf of your husband? "
C"Well, yes I am"
B"Oh, well that is confusing"
C "Not sure what is confusing about that?"
B "It just is, but tell me what you need"
GWAHHHHHHHH!! I can't stand dealing with billing and insurance and all that. Ended up with that I couldn't ask her to even resubmit the claim to the right place because I wasn't the patient. I told Brenda that she was a very difficult person and wished her a happy afternoon.
Seriously, there is no wonder its such a mess in this country with the insurance and medical 'department'. Hospitals billing way more than the should - insurance companies may or may not cover. Then patients may or may not be responsible to pay. Crazy. The thing is though, I am not even sure how it could be solved :) That should be a Nobel prize for that. Who can arrange the US health insurance issue! Anyway.
Aj is sleeping now and he is... Hopefully HALF WAY THERE!!! If he can stick with the original plan, this was 3/6 treatments! Just another 3 :) :) :) Half time :)
After the CHOP he came home and stayed in bed, after a couple of hours he felt a little nausea and took two pills for that and it went away. Aj stayed in bed all afternoon and evening and rested. During the night he had some trouble sleeping - one of chemo's side effects are - insomnia. Not sure what time he actually went to sleep but he was sound asleep when I got up this morning.
Then it was back to Seton today for injection. According to Aj - this one is easy :) They forgot to give him the steroids yesterday so we picked them up today - its the ones that he takes for 5 days after CHOP. It helps to fight side effects and makes him feel a little better.
Today he's been fine, after the injection he stays flat for a couple of hours so he doesn't get spinal head ache, which is supposed to be pretty bad. When I walked in to get him out of the post op room, I could hear someone talking very loud from way down the corridor. Shows out that its my dear hubby talking on Skype on his computer in the bed. There are quite a few post op rooms and they all just have curtains in the door ways. He was the annoying guy who was talking so loud, that everyone could hear him and the person he was talking to!!!! I should have complained to the nurses - he he he he.
Then home and rested in bed for the rest of the day. He feels 'toxic' again but no nausea or aching. The non aching part is to be pretty short lived though... going for Neulasta shot tomorrow. It wasn't as bad the 2nd time as the 1st time, so fingers crossed again that it won't be so painful this time.
I just got an EOB from insurance company that they had been billed from Seton North (which is where he had the last Neulasta shot since it was on a Saturday) I know for a fact this injection costs around $1200-1500. They had billed the insurance company $12 000!!!!! Excuse my language, but - F*****S!
I called the hospital and asked them what on earth they had billed for plus that they had again, sent the claim to the wrong place. The lady - Brenda, was being such a tart, so difficult. "Well.... you are confusing me, are you calling on behalf of your husband? "
C"Well, yes I am"
B"Oh, well that is confusing"
C "Not sure what is confusing about that?"
B "It just is, but tell me what you need"
GWAHHHHHHHH!! I can't stand dealing with billing and insurance and all that. Ended up with that I couldn't ask her to even resubmit the claim to the right place because I wasn't the patient. I told Brenda that she was a very difficult person and wished her a happy afternoon.
Seriously, there is no wonder its such a mess in this country with the insurance and medical 'department'. Hospitals billing way more than the should - insurance companies may or may not cover. Then patients may or may not be responsible to pay. Crazy. The thing is though, I am not even sure how it could be solved :) That should be a Nobel prize for that. Who can arrange the US health insurance issue! Anyway.
Aj is sleeping now and he is... Hopefully HALF WAY THERE!!! If he can stick with the original plan, this was 3/6 treatments! Just another 3 :) :) :) Half time :)
March 25, 2010
We just got home from the spinal injection. I went to yoga last night so I didn't have any energy left to write.
He is doing great, I just wanted to let you guys know. I will write more tonight. :)
He is doing great, I just wanted to let you guys know. I will write more tonight. :)
Wednesday, March 24, 2010
Tuesday, March 23, 2010
Stoning of Soraya - such a sad movie but really good
This morning the nurse wanted to see him in regards of the pain in the shoulder and the swollen armpit. (when I say swollen, its minute just so you don't think its a big lump sticking out) Just to check it out. They wanted to rule out that it was a blood clot in the port, so they sent Aj for an ultra sound. It came back fine, no blood clot.
The nurse said he could have an infection but his blood work doesn't really show that, his whites are normal. So nothing really that jumps out. He had a very mild head ache tonight.
I think he has been working a lot. At least I can get him to work from bed for the rest of the week now, since he is having treatment tomorrow.
So yesterday we met a couple who are truly amazing. Christy & Matt. Adrian knows Matt a little bit from before - he is a builder and built a house on Cortona (where we had the empty lot) Christy is 37 years old and two years ago they went to Colorado to go skiing with family. When they get there she gets this banging head ache that gets worse and worse.
Long story short they go to the doctor who checks her out sends her to the hospital where they realize its serious and that she needs to get to Denver asap. The only thing is its a snow storm outside and the helicopter can't fly. She has a tumor the size of an orange in her head.
The manage to get the ambulance which the couldn't even close the door on, because of ice! She had a huge swelling in her head and thankfully one doctor that they called at MD Anderson told the paramedics to give her 4 different drugs before they started driving. That helped to drain the head/brain on fluids. The drive took 4 hours! If that doctor hadn't told them to give those drugs she wouldn't have made the trip.
They ended up in Houston Md Anderson when she could travel there from Denver and had 10 hour surgery. Nobody knows where this tumor comes from or how long its been there but probably years they say.
Christy has now had chemo and radiation for 2 years solid. Not so much radiation in the last year. The tumor is gone but there are cancer cells in her brain that they can't remove. The cells aren't doing anything right now so they keep monitoring her. She gets really wiped out from her chemo - she sleeps for 7-10 days and is not feeling great.
Matt, Christy and their daughter Dylan (4yrs old) are amazing. They are so positive and energy is on top. Nothing can get Christy down. Its so encouraging so see someone like her in her position and still, she finds positive thoughts every day all day. The doctors basically gave her 3 years to live when this all happened. but she is proof of that every case is unique and that statistics aren't always right. Like she said, even if there is a 2 % chance of something - she could be that 2%. Its true.
So, with all this bad stuff going on right now. When we come out the other end, we have made new friends and got closer to some of our old friends and then we can just celebrate! The cancer has brought us some amazing people, I wish we didn't need a disease to meet them. But it just makes us look forward to remission and being able to fully enjoy them! :):):)
Before chop tomorrow AJ is going to see Dr. H - she has been on vacation and she wants to catch up with him and see how things are going. Basically lab works and vitals :)
The nurse said he could have an infection but his blood work doesn't really show that, his whites are normal. So nothing really that jumps out. He had a very mild head ache tonight.
I think he has been working a lot. At least I can get him to work from bed for the rest of the week now, since he is having treatment tomorrow.
So yesterday we met a couple who are truly amazing. Christy & Matt. Adrian knows Matt a little bit from before - he is a builder and built a house on Cortona (where we had the empty lot) Christy is 37 years old and two years ago they went to Colorado to go skiing with family. When they get there she gets this banging head ache that gets worse and worse.
Long story short they go to the doctor who checks her out sends her to the hospital where they realize its serious and that she needs to get to Denver asap. The only thing is its a snow storm outside and the helicopter can't fly. She has a tumor the size of an orange in her head.
The manage to get the ambulance which the couldn't even close the door on, because of ice! She had a huge swelling in her head and thankfully one doctor that they called at MD Anderson told the paramedics to give her 4 different drugs before they started driving. That helped to drain the head/brain on fluids. The drive took 4 hours! If that doctor hadn't told them to give those drugs she wouldn't have made the trip.
They ended up in Houston Md Anderson when she could travel there from Denver and had 10 hour surgery. Nobody knows where this tumor comes from or how long its been there but probably years they say.
Christy has now had chemo and radiation for 2 years solid. Not so much radiation in the last year. The tumor is gone but there are cancer cells in her brain that they can't remove. The cells aren't doing anything right now so they keep monitoring her. She gets really wiped out from her chemo - she sleeps for 7-10 days and is not feeling great.
Matt, Christy and their daughter Dylan (4yrs old) are amazing. They are so positive and energy is on top. Nothing can get Christy down. Its so encouraging so see someone like her in her position and still, she finds positive thoughts every day all day. The doctors basically gave her 3 years to live when this all happened. but she is proof of that every case is unique and that statistics aren't always right. Like she said, even if there is a 2 % chance of something - she could be that 2%. Its true.
So, with all this bad stuff going on right now. When we come out the other end, we have made new friends and got closer to some of our old friends and then we can just celebrate! The cancer has brought us some amazing people, I wish we didn't need a disease to meet them. But it just makes us look forward to remission and being able to fully enjoy them! :):):)
Before chop tomorrow AJ is going to see Dr. H - she has been on vacation and she wants to catch up with him and see how things are going. Basically lab works and vitals :)
Monday, March 22, 2010
Sunday, March 21, 2010
Spinal Tap - the movie
Aj & J are watching Spinal Tap - what a funny movie :):)
Nothing new to report - Aj feels good and has been going all day. His armpit is better than it was yesterday so I really think its the Chemo going to work on those nodes. If it was infection or anything else, it would be getting worse. At least that is what I think.
So all good over here!
Nothing new to report - Aj feels good and has been going all day. His armpit is better than it was yesterday so I really think its the Chemo going to work on those nodes. If it was infection or anything else, it would be getting worse. At least that is what I think.
So all good over here!
Saturday, March 20, 2010
Movie and Sleep over!
Beau, Connor & Jason are staying over tonight. Finally some balance with the hormones in the house :) Lee went out of town for a night so the boys are staying with us and Jason has come to see Aj for a couple of nights. Chloe was explaining to Connor & Beau who Jason is: Wellll, he is this really cool guy, who we really loooooove - and he looks cool too!! :) :) :)
Kiddos and I are watching Ice Age lll, its funny.
Aj & Jason just headed out for dinner. Aj has been feeling good. His armpit has been tender today and tonight it looked a liiiiiitle swollen. So I called the nurse just to be on the safe side.
He has no fever so that is good and they said that it could be nothing, just take an aspirin which would help if there was a tiny inflammation in there or if there was a build up in the port. But since no temperature its more likely its a side effect from the chemo. Just have keep an eye on it. Its great that we can call someone all hours of the day when we have questions.
Kiddos and I are watching Ice Age lll, its funny.
Aj & Jason just headed out for dinner. Aj has been feeling good. His armpit has been tender today and tonight it looked a liiiiiitle swollen. So I called the nurse just to be on the safe side.
He has no fever so that is good and they said that it could be nothing, just take an aspirin which would help if there was a tiny inflammation in there or if there was a build up in the port. But since no temperature its more likely its a side effect from the chemo. Just have keep an eye on it. Its great that we can call someone all hours of the day when we have questions.
Friday, March 19, 2010
Friday!
Having a ball with the girls being home for spring break ! Can't wait for summer to come - honestly. Its so sweet to have all three playing together.
Aj's back is doing better- pain is still there but not as much. His right armpit hurts a little, which they told us before - is the chemo working on the lymph node.
Jason arrives tomorrow so I think they are hitting town tomorrow night - SXSW is going on right now so its crazy. So for sure that is a sign he is doing good, right!? :)
Thursday, March 18, 2010
Baking day!
Dr. Glen Luepnitz - the guy we saw yesterday. He is very good and has a lot of knowledge about nutrition and cancer. Very very nice man. He looked to be in his 40's and then the phone rings and he gets off and says : that was my grandson! We were like - wow - then I asked if he was a teen dad :) So either he has great genes or he just really knows how to take care of himself - or both! Here is what he suggested - there are some other things to but that aren't really worth writing down.
Glutamine Powder 3 times daily, Tourine 2000mg day, CoQ10 200 mg daily as far as supplements. Follow the GI diet (G.I. is Glycemic Index) It's really just changing your eating habits so Aj/we will maintain a low glucose level (most fruits, berries - no melons and no tropical fruit, all veggies must (they can be raw if they can be washed thorough) be cooked/seared/stir fried so this does not allow Aj to eat salads which is allowed on the GI diet due to insecticides and the chance of getting sick while on chemo. All meats must be lean and ideally ground/flaked/stewed and well marinated. Vit. B6 100 mg daily (with all meals) and Magnesuim Malate 1000 mg/day.
He said that the WBC that is up is a fake one - like we know. But he also mentioned that the whites that are being produced are 'babies' they don't really know a whole lot. WBC goes on memory and live about 3 years. That they wouldn't really know how to fight an infection even if the count was high right now. Not that he is in a danger zone but for sure not eating salads :)
I spoke to Amira today and I told her Aj has some more supplements he wants to take. Her respond was in the broadest Texan accent: Ya'll wanna take mooore supplements???? :) :) :) So she advised to ask Dr. H what she says, I'll call there tomorrow. Its so lets say he doesn't take magnesium and his levels are normal so that it gets above normal. We'll see :)
Now I will get a couple of more books and cookbooks to my library more to read - can we change the day's hours from 24 to 36 ?? :)
Aj has a bit of pain in his back tonight, I called the on call doctor and asked her if it could have anything to do with the spinal - chemo and she said its too far out from that. That the pain is from the Neulasta shot - the bones ache to produce more whites blood cells. This darn Neulasta :) Its causing more pain than the chemo itself ! Other than that he is doing great! :)
Glutamine Powder 3 times daily, Tourine 2000mg day, CoQ10 200 mg daily as far as supplements. Follow the GI diet (G.I. is Glycemic Index) It's really just changing your eating habits so Aj/we will maintain a low glucose level (most fruits, berries - no melons and no tropical fruit, all veggies must (they can be raw if they can be washed thorough) be cooked/seared/stir fried so this does not allow Aj to eat salads which is allowed on the GI diet due to insecticides and the chance of getting sick while on chemo. All meats must be lean and ideally ground/flaked/stewed and well marinated. Vit. B6 100 mg daily (with all meals) and Magnesuim Malate 1000 mg/day.
He said that the WBC that is up is a fake one - like we know. But he also mentioned that the whites that are being produced are 'babies' they don't really know a whole lot. WBC goes on memory and live about 3 years. That they wouldn't really know how to fight an infection even if the count was high right now. Not that he is in a danger zone but for sure not eating salads :)
I spoke to Amira today and I told her Aj has some more supplements he wants to take. Her respond was in the broadest Texan accent: Ya'll wanna take mooore supplements???? :) :) :) So she advised to ask Dr. H what she says, I'll call there tomorrow. Its so lets say he doesn't take magnesium and his levels are normal so that it gets above normal. We'll see :)
Now I will get a couple of more books and cookbooks to my library more to read - can we change the day's hours from 24 to 36 ?? :)
Aj has a bit of pain in his back tonight, I called the on call doctor and asked her if it could have anything to do with the spinal - chemo and she said its too far out from that. That the pain is from the Neulasta shot - the bones ache to produce more whites blood cells. This darn Neulasta :) Its causing more pain than the chemo itself ! Other than that he is doing great! :)
Wednesday, March 17, 2010
GI Diet here we come!
We just got back from meeting and dinner party at Lee's house. It too much to write tonight so I will write tomorrow. too tired :)
Its just positive info on how we can do the most to help Aj's body to recover and stay strong. :)
Its just positive info on how we can do the most to help Aj's body to recover and stay strong. :)
Tuesday, March 16, 2010
Rain Rain Rain Rain Rain
Rained the whole day here - so no soccer for girls. They were ok with it though because they got to wear their soccer outfits anyway - except from the cleats.
Adrian worked like normal today, he was tired this afternoon, but he also didn't go to sleep until 2 am last night.
Everything is going good. He is eating and feeling good :)
Heading to the nutritionist tomorrow afternoon!
I found a forum where people with Lymphomas discuss - but nobody has the same DX as Aj. There was one guy who seemed to know a lot and I contacted him and it shows out he is in AUSTIN! Hahahhaha pretty funny -- he is abotu 20 minutes from our house. He has not had cancer himself but is a free lance writer and writes about Lymphoma therefor his knowledge. I will pick his brain about what he does know though!
So again... no news are good news!!
Adrian worked like normal today, he was tired this afternoon, but he also didn't go to sleep until 2 am last night.
Everything is going good. He is eating and feeling good :)
Heading to the nutritionist tomorrow afternoon!
I found a forum where people with Lymphomas discuss - but nobody has the same DX as Aj. There was one guy who seemed to know a lot and I contacted him and it shows out he is in AUSTIN! Hahahhaha pretty funny -- he is abotu 20 minutes from our house. He has not had cancer himself but is a free lance writer and writes about Lymphoma therefor his knowledge. I will pick his brain about what he does know though!
So again... no news are good news!!
Monday, March 15, 2010
Soccer Time!
Girls started soccer today - spring break camp and then they will do camp this summer. They are hooked!!! :) seemed like they had imported a bunch of scousers (people from Liverpool) to run the operation. But hey, no better soccer players than from Liverpool & Manchester!
Anyway... girls loved it and looked soooo cute in their chin guards, shorts and jerseys!
Aj has worked a normal day today, I think he is a little wiped tonight, but no aches or anything! Seems like its Chemo - then for 5 days after that he feels crabby and then its good until next treatment. - Next week is the third one. Its amazing how the weeks go by now, it all counts via the treatments. That is how I look at the calendar now. Not for days and weeks and which month it is, I look and count the days to next treatment or next Dr. visit.
This week on Wednesday we are meeting with the nutritionist to have him help with what to eat and what not to eat. He is a Dr. and our friends have used him and it will be interesting to see what he has to suggest.
The Vita Mixer goes warm in this house hold - at least 3 times a day! Last time they weighed Aj, on.... Friday he was 158 with clothes on, so its possible that he has put on some weight! :) at least a few lbs.
Anyway... girls loved it and looked soooo cute in their chin guards, shorts and jerseys!
Aj has worked a normal day today, I think he is a little wiped tonight, but no aches or anything! Seems like its Chemo - then for 5 days after that he feels crabby and then its good until next treatment. - Next week is the third one. Its amazing how the weeks go by now, it all counts via the treatments. That is how I look at the calendar now. Not for days and weeks and which month it is, I look and count the days to next treatment or next Dr. visit.
This week on Wednesday we are meeting with the nutritionist to have him help with what to eat and what not to eat. He is a Dr. and our friends have used him and it will be interesting to see what he has to suggest.
The Vita Mixer goes warm in this house hold - at least 3 times a day! Last time they weighed Aj, on.... Friday he was 158 with clothes on, so its possible that he has put on some weight! :) at least a few lbs.
Sunday, March 14, 2010
Pappa - You have one boobie, two boobies and three boobies!!
The girls just jumped into the tub with Aj and they all looked at the port on his chest. Chloe says: Do you have stitches pappa!!??
Sienna goes: You have one boobie... two boobies (points to his nipples) and THREE boobies!!
(the last one being the port) - hahahhaha :) Pretty funny :) :)
Oh, Chloe also told Aj he looked like an old man with no hair :) - that he looks good with hair. So Aj explained that he looses his hair due to medicine that he is getting, but the girls won't loose their hair if they get sick. The were totally ok with that.
We had a great evening over at Lee's house (Lee, Connor & Beau) BBQ and some wine and just very chilled. Lee and I spent the whole afternoon at Austin Country club watching the kids play on the putting green and having lunch.
All good over here in Austin!!
Saturday, March 13, 2010
No news are good news... :)
So nothing at all to report today about Aj and how he feels. We went to Austin Rodeo with the girls today and then out for dinner with some friends and their girls. Really nice!
Except from shorter hair cut, there is no difference in condition at all. so that is good! He takes the propoxy during evening and night, since it makes him drowsy.
Our friends Stuart & Kathy gave us an oil tonight - Thieves oil, supposed to have different healing powers. One thing for sure it smells good - very calming and I think that is the purpose of it. I think they are pretty much in to the natural healing stuff so I will talk to them more about what is good and all that kind of stuff. I find it interesting too.
Except from shorter hair cut, there is no difference in condition at all. so that is good! He takes the propoxy during evening and night, since it makes him drowsy.
Our friends Stuart & Kathy gave us an oil tonight - Thieves oil, supposed to have different healing powers. One thing for sure it smells good - very calming and I think that is the purpose of it. I think they are pretty much in to the natural healing stuff so I will talk to them more about what is good and all that kind of stuff. I find it interesting too.
Friday, March 12, 2010
Friday - Spring Break!
Thank God its the last morning that we have to wake up early for at least a week! Got to love breaks from school. :)
Aj is aching a bit still, from the Neulasta shot. We did get a little bit of an explanation today, from Lisa - the nurse practitioner.
I thought it would be a good idea to bring the girls to Texas Oncology today, so they can see where Pappa's doctor is. They did pretty well, it gets boring of course for them to sit in a little room to wait.
This morning before we went Aj took Olivia out on the bike for a bit, which is not as easy as it used to be for him. He did it and then came in and laid on the sofa to catch his breath.
First he did a blood test for labs - which came out great. His WBC is 10.4 which shows his immune system is up and the Neulasta is working. He is a liiiiiitle bit anemic but not so that they are alarmed and that is due to the Chemo wiping out everything - good and bad.
It was Lisa who saw Aj today - the incredibly sweet nurse practitioner. We asked her about the Neulasta how come the aches and pains. She says that its due to that the bone marrow is producing new white blood cells and when its working on that it causes aches. Aj should feel it mostly in the bigger bones since that is where he has the most bone marrow. Pelvis area, legs, arms & back pretty much accurate to what he feels. So the good with this pain is that we know its producing something positive.
Other than that, no news really. Aj got a new hairdo tonight, mind you it doesn't look much different from before. We took a razor and did a close shave, because all the little hairs were hurting when they were coming out. Lisa said the Chemo messes up your follicles and that can make it hurt. So it made sense there as well, why the pain was there. Its always nice to have an explanation to why things are feeling or doing certain things.
All in all, Aj is doing as good as he can!
Aj is aching a bit still, from the Neulasta shot. We did get a little bit of an explanation today, from Lisa - the nurse practitioner.
I thought it would be a good idea to bring the girls to Texas Oncology today, so they can see where Pappa's doctor is. They did pretty well, it gets boring of course for them to sit in a little room to wait.
This morning before we went Aj took Olivia out on the bike for a bit, which is not as easy as it used to be for him. He did it and then came in and laid on the sofa to catch his breath.
First he did a blood test for labs - which came out great. His WBC is 10.4 which shows his immune system is up and the Neulasta is working. He is a liiiiiitle bit anemic but not so that they are alarmed and that is due to the Chemo wiping out everything - good and bad.
It was Lisa who saw Aj today - the incredibly sweet nurse practitioner. We asked her about the Neulasta how come the aches and pains. She says that its due to that the bone marrow is producing new white blood cells and when its working on that it causes aches. Aj should feel it mostly in the bigger bones since that is where he has the most bone marrow. Pelvis area, legs, arms & back pretty much accurate to what he feels. So the good with this pain is that we know its producing something positive.
Other than that, no news really. Aj got a new hairdo tonight, mind you it doesn't look much different from before. We took a razor and did a close shave, because all the little hairs were hurting when they were coming out. Lisa said the Chemo messes up your follicles and that can make it hurt. So it made sense there as well, why the pain was there. Its always nice to have an explanation to why things are feeling or doing certain things.
All in all, Aj is doing as good as he can!
Thursday, March 11, 2010
Wednesday, March 10, 2010
I think spring is here
Clear blue sky and not a cloud to be seen. Gorgeous day and Olivia and I went swimming this morning. She did great, with her friend Ben who is like one of those toys you wind up in the back and then let go. Baby O told Aj at the dining table it was 'awesome' :) I nearly died when she said that. How cuuuuute!
Aj has pain in his right biceps, wether its from Neulasta, Chemo or cell count being low - actually we don't know if its low or not, just doing the calculation of 6-7 days after chemo. He says its like someone has punched him really hard right in the muscle. Other than that he is still a little all over sore. I asked that he would work from bed tomorrow to get some rest, maybe he has overdone things because he has felt pretty good. I feel like a drill Sergeant :) - eat this, eat that, don't eat this, rest, don't to this. He is listening pretty well though - I got him trained :)
His facial hair looks like the hair of a teenager. Its about 4-5 mm long and it has thinned out which makes it look like fluff :) so a bit of fluff on his chin! The front half of his head has pretty much lost all the hair, the back not so bad. But honestly - I promise, if you saw him right now, you still wouldn't know he is sick. He looks like he does in the summer when he has shaved his head, that is all. I can post a picture later on to show you :).
All in all he still looks great and is eating like normal, his taste buds has come back again so it seems like his body bounces back from Chemo pretty quickly! Of course he has not much energy but spirit is high and mood on top!
Aj has pain in his right biceps, wether its from Neulasta, Chemo or cell count being low - actually we don't know if its low or not, just doing the calculation of 6-7 days after chemo. He says its like someone has punched him really hard right in the muscle. Other than that he is still a little all over sore. I asked that he would work from bed tomorrow to get some rest, maybe he has overdone things because he has felt pretty good. I feel like a drill Sergeant :) - eat this, eat that, don't eat this, rest, don't to this. He is listening pretty well though - I got him trained :)
His facial hair looks like the hair of a teenager. Its about 4-5 mm long and it has thinned out which makes it look like fluff :) so a bit of fluff on his chin! The front half of his head has pretty much lost all the hair, the back not so bad. But honestly - I promise, if you saw him right now, you still wouldn't know he is sick. He looks like he does in the summer when he has shaved his head, that is all. I can post a picture later on to show you :).
All in all he still looks great and is eating like normal, his taste buds has come back again so it seems like his body bounces back from Chemo pretty quickly! Of course he has not much energy but spirit is high and mood on top!
Tuesday, March 9, 2010
The Wire
All in all a great day, Aj has been going a lot today - he can feel some Neulasta soreness. Last time it was the inside of his thighs, now its the sides of his abdomen. He is tired tonight which would be expected from being up as much as he has today. Still he is NOT (those capital letters are for Tommy when he reads this) :) - sweating anything at night.
I had another interesting conversation with another Swedish woman - Marie. She got diagnosed with stage lV breast cancer 10 years ago, it went away and came back 2 years later. According to statistics she should have been dead 5 years ago, she said. But she is still here, very much alive and kicking! She is receiving Chemo every two weeks and will do so for the rest of her life. That is what they do for stage lV breast cancer.
She said that she just learned to live with it and that it gets easier. Now, this is completely different than Aj's diagnoses and I don't compare illness or treatment. Its just nice to talk to people who have cancer and see how they experience theirs and little tips and stuff. Marie said she gets tired afterwards and sleeps for a few hours after her treatment. Then after a few days it can go away or not.
She also said that if she was to change doctor for any reason within Texas Oncology, she would go to Dr. Hellerstedt. That is great to hear, which confirms how we feel about Dr. H already. Marie would know - she has been at Texas Oncology for 10 years now.
I had another interesting conversation with another Swedish woman - Marie. She got diagnosed with stage lV breast cancer 10 years ago, it went away and came back 2 years later. According to statistics she should have been dead 5 years ago, she said. But she is still here, very much alive and kicking! She is receiving Chemo every two weeks and will do so for the rest of her life. That is what they do for stage lV breast cancer.
She said that she just learned to live with it and that it gets easier. Now, this is completely different than Aj's diagnoses and I don't compare illness or treatment. Its just nice to talk to people who have cancer and see how they experience theirs and little tips and stuff. Marie said she gets tired afterwards and sleeps for a few hours after her treatment. Then after a few days it can go away or not.
She also said that if she was to change doctor for any reason within Texas Oncology, she would go to Dr. Hellerstedt. That is great to hear, which confirms how we feel about Dr. H already. Marie would know - she has been at Texas Oncology for 10 years now.
Gorgeous Day in Austin!!
Really unbelievable day!! Its so gorgeous outside - best day this year (weather wise) Aj feels the Nuelasta a little bit, but not enough to keep him in bed or anything. He went to the office to work a little bit this morning went for a lunch meeting!!! So he is out right now, having lunch and then I think he was going to meet another man who has cancer (in remission)
I am so happy that he is out moving around and getting a dose of sunshine today!
I chatted with a Swedish woman who's husband, Per just had a bone marrow transplant due to leukemia. He just got a letter giving him all clear on cancer yesterday! They found his donor in Europe!!!
His sister and kids were not even close matches and they found a 37 year old man in Europe who almost had a perfect match, isn't that just incredible!? That is crazy.
They flew over the stem cells - a person from MD Anderson went and collected them and then brought them back, they have to time it perfect with Chemo beforehand (a week) the plane landed at 4 pm and 9.30pm they had started the transplant - that was on Feb. 3. She said it costed their insurance company $500 000 (!!!!!!!) I didn't want to ask how much they had to pay of that... Also I don't think its the same cost for everyone - since each case is unique. Also - Per has leukemia and has to completely change blood too. Its just crazy crazy crazy - imagine changing blood...
I am so happy that he is out moving around and getting a dose of sunshine today!
I chatted with a Swedish woman who's husband, Per just had a bone marrow transplant due to leukemia. He just got a letter giving him all clear on cancer yesterday! They found his donor in Europe!!!
His sister and kids were not even close matches and they found a 37 year old man in Europe who almost had a perfect match, isn't that just incredible!? That is crazy.
They flew over the stem cells - a person from MD Anderson went and collected them and then brought them back, they have to time it perfect with Chemo beforehand (a week) the plane landed at 4 pm and 9.30pm they had started the transplant - that was on Feb. 3. She said it costed their insurance company $500 000 (!!!!!!!) I didn't want to ask how much they had to pay of that... Also I don't think its the same cost for everyone - since each case is unique. Also - Per has leukemia and has to completely change blood too. Its just crazy crazy crazy - imagine changing blood...
Wow!!
I can't believe I forgot to write last night!
Not like I had any thing new to tell. Aj is still feeling the same, no sever aches or pains. Just feeling weird. But today he has gone out to the office to work a little bit.
Its a gorgeous day and I am taking Baby O to the lake right now!
Not like I had any thing new to tell. Aj is still feeling the same, no sever aches or pains. Just feeling weird. But today he has gone out to the office to work a little bit.
Its a gorgeous day and I am taking Baby O to the lake right now!
Sunday, March 7, 2010
Oscars*Glitz & Glam*
Adrian and I have switched sides in the bed, since he had the port put in. Since its on his right side it was easier for him to reach things on his left (from the night stand) and I don't care which side I sleep on :). It was actually quite pleasant this morning when I wake up to hear 'pappa' 'pappa' Olivia touched my nose 'pappa' 'pappa listen' :) :) it was Sienna. The nice thing was that it wasn't someone talking to me - 2 inches from my face. It was distant - the other side of the bed. For 5 years I have been the one sleeping closest to the door, therefor the one who gets the first 'call' when someone enters the room.
Shame for Adrian its when he is not feeling his best. So I called Sienna over pretty quick so she wouldn't wake him up. :)
Aj had a pretty good night, not sweating like he did after the first chemo at all. you should see the bed, there is a pee pad sheet on top of the normal sheet, then there are two xxl towels and then another pee pad sheet on top of that. That is so if he sweats and wakes up in the middle of the night, all he has to do is to pull off the pad and then he has a dry towel to sleep on until he needs to pull another one out. No need to even get out of the bed! As simple as possible.
I do the same questions every morning when we wake up to assess the night and morning: (kind of feel like an investigator but you men (only Tommy, Oliver, Jocum & dad reading this) seem to not tell any details unless you get asked, wether its illness or what you were up to on a Friday night - its just how you are wired I guess :) :) Here the morning questions:
How did you sleep
Are you in pain
What do you feel
What do you want for breakfast
This morning he felt a little nauseated and toxic. But still in good mood and unless he told you, you wouldn't really know how he feels. He looks great, hasn't lost any more weight and no more dark circles under his eyes either. Skin is clear and the little bumps he had all over his body are pretty much gone, the ones that are there just looks like flat moles. In short, he looks good.
Aj stayed home in bed when we left with the girls to get some rest and also I found out when we got back that the Propoxy makes him a little drowsy. Propoxy is the same as Darvon and is a pain medicine which does not reduce fever. He shouldn't take anything that will reduce a fever, because in that case we wouldn't know if he had one and if he did the doctor needs to know as soon as possible since it could be an infection or cold coming.
I think if you going to have some sort of timing on having all this, I rather Aj have this now, when the worst of the flu season is over. Can you imagine having to go through being prone to infections and keeping away from anyone with runny noses or coughs in November??
Back to Aj, he has rested a lot today which is good, he is a little constipated - not sure he would want to share that with you guys or not, but now its too late - I just did. Just don't mention it too him, when you speak to him ;).
Everything tastes bland again, water tastes like metal - all side effects from CHOP. The taste buds gets fried and then as it 'wears off' the taste comes back until next time.
Saturday, March 6, 2010
Neulasta day
Went up to Seton NW this morning to get the Neulasta shot, its a $1000 shot that is tiny! It has proven to do the trick though (last time he had it) !
Aj felt fine all day and even after the shot, he took Propoxy (pain med) right afterwards just to see if it would be better this time to plan ahead with the pain medicine.
Its now 22.30 and not doing too bad at all in regards of pain from Neulasta, just took two pills about 1 hour ago which should tie him over for about 6-8 hours. (He is not feeling pain yet)
The port is not so sore anymore, just a little bit tender.
Aj has a new great haircut, so now you can't even see that he is loosing hair here and there. Its super short and he looks really hot :) :) :) ! Still eating great, taking all the vitamins and reds and greens. :)
Aj felt fine all day and even after the shot, he took Propoxy (pain med) right afterwards just to see if it would be better this time to plan ahead with the pain medicine.
Its now 22.30 and not doing too bad at all in regards of pain from Neulasta, just took two pills about 1 hour ago which should tie him over for about 6-8 hours. (He is not feeling pain yet)
The port is not so sore anymore, just a little bit tender.
Aj has a new great haircut, so now you can't even see that he is loosing hair here and there. Its super short and he looks really hot :) :) :) ! Still eating great, taking all the vitamins and reds and greens. :)
Friday, March 5, 2010
Back to Seton Central
First of all :) If you don't want to get the email reminder every time I post something, let me know and I can easily remove you from the list and you log in and look at the blog when you want to. Just let me know :)
Back to Seton today, same walk down the hall way down to the elevators but then only up to 1st floor. Checked in to pre op. This is where they do all the pre op and post op for the whole hospital, anything from small things to brain surgery.
Waiting in the room and this guy comes in - Mark. He has to draw some blood and put in IV. He was talking a lot about where is the best place to put the IV AND that he is the BEST to put it in. Mark put the needle in but didn't get it right away but fairly quickly it was all there. Aj was pulling some faces that it was annoying pain, Mark said that once he was done he could let the hand down and it would feel better.
Mark left and we were sitting there and Aj is cursing the IV, says it hurts... After about 10-15 min the other nurse Anne comes in and we tell her it hurts and then she says, I didn't know he was putting one in. Let me double check... comes back and says its not needed and pulls it out. To Aj's joy :) But then it starts hurting and he has a small bump where Mark put in the IV instead. Not terrible, just like an annoying pain, that didn't have to be there at all. They also kept him from eating, which we think was a mistake.. urghh :) He couldn't eat until the procedure was done, but I think that the Seton when they called him yesterday and did the pre reg, didn't know what he had done, they thought it was surgery... and then they can't eat after midnight. So the whole morning until about 2 pm he didn't eat anything. I think he was hungry too when he was reacting about the IV, but totally understandable.
He got rolled in to this room where I took the pictures and little film clip. Laid on the table and they took the xray before they did the spinal tap with chemo. The nurse said it was a very small amount they put in since they are targeting the bone marrow directly.The drug they injected is called Methotrexate. Afterwards he had to lay flat for about 2 hours so that he wouldn't get spinal head ache which they say can be really painful.
After that we went home and he's been taking it easy in bed after that. He is feeling ok, took a few nausea tablets when we got home. He says that he is not feeling super sick more 'just' toxic. Seems like its just weird feeling, not a feeling of normal and not super bad.... But his mood is great and he is positive about it all.
I sent a message down to MD Anderson to see if they had received the other slides or blocks from Seton, but Valerie (nurse) responded that they hadn't got any apart from on the 19th of Feb. I called Michelle in Pathology at Seton and she said she had sent unstained slides the day after we had spoken, which would be Tuesday. I hope that is the case, just have to see next week when Amira is back in office (Dr. Fayad's nurse).
As you can see his hair is coming out more and more. I think we are going to get the clippers out tomorrow to make it shorter so its less noticeable. He is not bothered by it, honestly. He looks really good in general, his weight today showed 157 lbs, but that was with all his clothes on, so I think more or less the same as last time 153 lbs. I am very happy with that, as long as it doesn't go down its fine with me.
Aj eats all the time just like he always has. He is eating everything and anything :) - while he was in doing treatment, I went to Central Market to get a loaf of bread and some other things that he likes. It was a massive loaf of french boule bread. He ate the WHOLE thing in post op room!!! Talk about dough in your belly :) :) :)
Tomorrow morning we are heading to Seton NW for a Neulasta shot, that has to be taken within 72 hours of the Chop and we weren't done in time today to make it to Dr. H's office. Its just a quick shot, but its the one that gives the aches and pains in the bones. This time we have the meds prepared for it so lets see what happens. Fingers crossed!
Back to Seton today, same walk down the hall way down to the elevators but then only up to 1st floor. Checked in to pre op. This is where they do all the pre op and post op for the whole hospital, anything from small things to brain surgery.
Waiting in the room and this guy comes in - Mark. He has to draw some blood and put in IV. He was talking a lot about where is the best place to put the IV AND that he is the BEST to put it in. Mark put the needle in but didn't get it right away but fairly quickly it was all there. Aj was pulling some faces that it was annoying pain, Mark said that once he was done he could let the hand down and it would feel better.
Mark left and we were sitting there and Aj is cursing the IV, says it hurts... After about 10-15 min the other nurse Anne comes in and we tell her it hurts and then she says, I didn't know he was putting one in. Let me double check... comes back and says its not needed and pulls it out. To Aj's joy :) But then it starts hurting and he has a small bump where Mark put in the IV instead. Not terrible, just like an annoying pain, that didn't have to be there at all. They also kept him from eating, which we think was a mistake.. urghh :) He couldn't eat until the procedure was done, but I think that the Seton when they called him yesterday and did the pre reg, didn't know what he had done, they thought it was surgery... and then they can't eat after midnight. So the whole morning until about 2 pm he didn't eat anything. I think he was hungry too when he was reacting about the IV, but totally understandable.
He got rolled in to this room where I took the pictures and little film clip. Laid on the table and they took the xray before they did the spinal tap with chemo. The nurse said it was a very small amount they put in since they are targeting the bone marrow directly.The drug they injected is called Methotrexate. Afterwards he had to lay flat for about 2 hours so that he wouldn't get spinal head ache which they say can be really painful.
After that we went home and he's been taking it easy in bed after that. He is feeling ok, took a few nausea tablets when we got home. He says that he is not feeling super sick more 'just' toxic. Seems like its just weird feeling, not a feeling of normal and not super bad.... But his mood is great and he is positive about it all.
I sent a message down to MD Anderson to see if they had received the other slides or blocks from Seton, but Valerie (nurse) responded that they hadn't got any apart from on the 19th of Feb. I called Michelle in Pathology at Seton and she said she had sent unstained slides the day after we had spoken, which would be Tuesday. I hope that is the case, just have to see next week when Amira is back in office (Dr. Fayad's nurse).
As you can see his hair is coming out more and more. I think we are going to get the clippers out tomorrow to make it shorter so its less noticeable. He is not bothered by it, honestly. He looks really good in general, his weight today showed 157 lbs, but that was with all his clothes on, so I think more or less the same as last time 153 lbs. I am very happy with that, as long as it doesn't go down its fine with me.
Aj eats all the time just like he always has. He is eating everything and anything :) - while he was in doing treatment, I went to Central Market to get a loaf of bread and some other things that he likes. It was a massive loaf of french boule bread. He ate the WHOLE thing in post op room!!! Talk about dough in your belly :) :) :)
Tomorrow morning we are heading to Seton NW for a Neulasta shot, that has to be taken within 72 hours of the Chop and we weren't done in time today to make it to Dr. H's office. Its just a quick shot, but its the one that gives the aches and pains in the bones. This time we have the meds prepared for it so lets see what happens. Fingers crossed!
Thursday, March 4, 2010
Round two - ding ding ding! Done!
Two down a few more to go!
Suzie the nurse that took care of Aj today was a doll. I can't believe how lucky we have been with all the nurses we have met. They have all been phenomenal.
First when we came in Aj got to sit in the recliner and then Suzie came and explained everything about CHOP - that took a while... :) We stopped asking questions in the end so it would wrap up a little quicker.
The first bag they put was just normal saline to flush the brand new Power port 'line' - worked like a charm. Suzie said she got excellent blood return. She sent some off to the lab and white blood cell count came back at 10 - still doing great.
Then it was a bag of anti nausea IV and then the rest. It went pretty quick and Aj was working away as they were doing it.
Remember Pat, the super sweet lady that we met last time, who showed us her port. She was in there today and came up to say hello. It was great seeing her and she was just done with her 3 day chemo. Such a sweet soul. :)
We came home and Aj took a bit of a snooze and ate some food. When he woke up around 4 he felt a little 'funny' so he took an anti nausea pill. Then he was fine, took another one tonight and now we are in bed watching TV. He doesn't feel sick or nausea, he says its just feels like they poured a bunch of toxic stuff in his body. Which they have. Looking at it in another way, it would be weird if he DIDN'T have any side effects from chemo.
They do think that his side effects will be pretty low though, due to that last time he got Chop, everything was out of whack. This time around the previous chemo has helped to 'control' the cancer so its not as crazy. One day at the time :)
Other than that Adrian is doing really well. His spirit is up and he is pretty much like normal. Unless you knew what was going on inside, you wouldn't know.
Tomorrow we go to Seton for the chemo in the spine, they said it shouldn't hurt that bad at all. He has already had a spinal tap and did fine, so this won't be any worse.
Suzie the nurse that took care of Aj today was a doll. I can't believe how lucky we have been with all the nurses we have met. They have all been phenomenal.
First when we came in Aj got to sit in the recliner and then Suzie came and explained everything about CHOP - that took a while... :) We stopped asking questions in the end so it would wrap up a little quicker.
The first bag they put was just normal saline to flush the brand new Power port 'line' - worked like a charm. Suzie said she got excellent blood return. She sent some off to the lab and white blood cell count came back at 10 - still doing great.
Then it was a bag of anti nausea IV and then the rest. It went pretty quick and Aj was working away as they were doing it.
Remember Pat, the super sweet lady that we met last time, who showed us her port. She was in there today and came up to say hello. It was great seeing her and she was just done with her 3 day chemo. Such a sweet soul. :)
We came home and Aj took a bit of a snooze and ate some food. When he woke up around 4 he felt a little 'funny' so he took an anti nausea pill. Then he was fine, took another one tonight and now we are in bed watching TV. He doesn't feel sick or nausea, he says its just feels like they poured a bunch of toxic stuff in his body. Which they have. Looking at it in another way, it would be weird if he DIDN'T have any side effects from chemo.
They do think that his side effects will be pretty low though, due to that last time he got Chop, everything was out of whack. This time around the previous chemo has helped to 'control' the cancer so its not as crazy. One day at the time :)
Other than that Adrian is doing really well. His spirit is up and he is pretty much like normal. Unless you knew what was going on inside, you wouldn't know.
Tomorrow we go to Seton for the chemo in the spine, they said it shouldn't hurt that bad at all. He has already had a spinal tap and did fine, so this won't be any worse.
Wednesday, March 3, 2010
Port is in place
This morning Aj showed me his hands when he was washing his hair and there were lots of little hairs in the palms of his hands. I keep staring at his head to see if I can see any difference and today we could see it thinning more in one area by his left temple. Other than that it might look a little thinner but still, there is a lot more to come off. Maybe in a week or two all of it will be gone.
Kind of good that it comes off slowly, we all get time to get used to it. Especially the girls, but then again, they didn't even bat an eyelid when he shaved his head this time. They are used to his little stunts here and there.
We drove to the clinic which is close to Seton hospital. Sat in the waiting room for a short while and then they called Aj back and dad, Olivia and I went to Central Market to play which is side by side to the clinic. So I could see the building from the playground. This was about 10 am.
At noon the doctor called me to say that everything had gone really well and that Aj was awake and he was feeling good.
He told me what to look for if something should start looking bad and I would need to call them. They took an xray to make sure it was in place like it should. I asked him if they had put it up the neck just like we had seen on Pam, the super sweet lady at Dr. H's office or across the chest. He said he'd put it across his chest and it should be a comfortable spot to have it. Its called a Power Port - the latest in ports. They can draw blood, inject radioactive liquid for CT scans through it, which is not possible with any other ports. That is pretty cool :)
I went over to pick him up and he was very alert and said he was feeling great. Very cool!!!!
Went home and he has been taking it pretty easy this afternoon, took a snooze and then had dinner with us all. Aj just told me it hurts a little (which is totally normal) but he can't tell wether its the skin where the port has been placed that hurts or where the actual 'cord' is in the vein, its just sore he said. He got good painkillers to take care of that and I finally got one of those pill dividers today. So many pills to get out every morning so this is a lot easier!
Another fun aspect of this whole situation started a little bit today... :S - Insurance!
I called our insurance broker (who happen to know Aj from the gym) I told him that I have a stack enough to make a book of EOB's and I need to know what to do in the end. Since all of them have claimed with the wrong department in the insurance company. Which according to Chris, they should know better. Anyway, I am going to just collect the EOB's and then Chris and I will sit down and go through it all in detail. He said we have at least 3 months before we need to really start looking at it and pay. Feels great to have Chris to help out with these things. I hate dealing with insurance companies and I am not convinced yet that this will be pleasant.
About 15 min after I had spoken to Chris, the Oncologist office called, it was James - the financial advisor - talk about timing!!
He just wanted to collect a 'small' deposit while we are waiting for the claims to get sent to the insurance company. 'yeah right' - like that is going to happen, I asked him if theoretically he shouldn't claim via insurance company and we can just wait and pay until that happens. Why the need of deposit or payment plan which was his next subject. He gave me a ton of reasons why it would be good to do this but I wasn't convinced... so I called Chris when I got off the phone and asked if I had to pay anything to them now. He said absolutely not, there is no reason for doing that and they are just trying to get cash where they can. ... well... they are not getting it from us... not yet anyway. I don't have a problem paying for what they do, not in any way. They can just wait like the hospital and all the doctors there, claim then get money :) Oh well, I can tell this is just the beginning of this carousel! :) :) :)
I asked James, just out of curiosity - If I didn't have any insurance at all.. and had to come in and get the CHOP and Neulasta shot that Aj gets, how how much would that cost.
He said, CHOP, Neulasta and lab work costs around... $10 000 - 11 000 per treatment... times 6 or 8 - its a lot.. wow... can you imagine not having insurance and have to do this, it would be impossible!
Tomorrow Aj has chemo in Dr. H's office in the morning and then at Seton on Friday as well as Neulasta shot.
Aj is a trooper, I am so proud of him. He is so fantastic - the way he is handling everything and being positive and strong. All I can do is support, but he has to do all the hard work - treatments and medicines and god knows what.
Time to get some sleep...
Kind of good that it comes off slowly, we all get time to get used to it. Especially the girls, but then again, they didn't even bat an eyelid when he shaved his head this time. They are used to his little stunts here and there.
We drove to the clinic which is close to Seton hospital. Sat in the waiting room for a short while and then they called Aj back and dad, Olivia and I went to Central Market to play which is side by side to the clinic. So I could see the building from the playground. This was about 10 am.
At noon the doctor called me to say that everything had gone really well and that Aj was awake and he was feeling good.
He told me what to look for if something should start looking bad and I would need to call them. They took an xray to make sure it was in place like it should. I asked him if they had put it up the neck just like we had seen on Pam, the super sweet lady at Dr. H's office or across the chest. He said he'd put it across his chest and it should be a comfortable spot to have it. Its called a Power Port - the latest in ports. They can draw blood, inject radioactive liquid for CT scans through it, which is not possible with any other ports. That is pretty cool :)
I went over to pick him up and he was very alert and said he was feeling great. Very cool!!!!
Went home and he has been taking it pretty easy this afternoon, took a snooze and then had dinner with us all. Aj just told me it hurts a little (which is totally normal) but he can't tell wether its the skin where the port has been placed that hurts or where the actual 'cord' is in the vein, its just sore he said. He got good painkillers to take care of that and I finally got one of those pill dividers today. So many pills to get out every morning so this is a lot easier!
Another fun aspect of this whole situation started a little bit today... :S - Insurance!
I called our insurance broker (who happen to know Aj from the gym) I told him that I have a stack enough to make a book of EOB's and I need to know what to do in the end. Since all of them have claimed with the wrong department in the insurance company. Which according to Chris, they should know better. Anyway, I am going to just collect the EOB's and then Chris and I will sit down and go through it all in detail. He said we have at least 3 months before we need to really start looking at it and pay. Feels great to have Chris to help out with these things. I hate dealing with insurance companies and I am not convinced yet that this will be pleasant.
About 15 min after I had spoken to Chris, the Oncologist office called, it was James - the financial advisor - talk about timing!!
He just wanted to collect a 'small' deposit while we are waiting for the claims to get sent to the insurance company. 'yeah right' - like that is going to happen, I asked him if theoretically he shouldn't claim via insurance company and we can just wait and pay until that happens. Why the need of deposit or payment plan which was his next subject. He gave me a ton of reasons why it would be good to do this but I wasn't convinced... so I called Chris when I got off the phone and asked if I had to pay anything to them now. He said absolutely not, there is no reason for doing that and they are just trying to get cash where they can. ... well... they are not getting it from us... not yet anyway. I don't have a problem paying for what they do, not in any way. They can just wait like the hospital and all the doctors there, claim then get money :) Oh well, I can tell this is just the beginning of this carousel! :) :) :)
I asked James, just out of curiosity - If I didn't have any insurance at all.. and had to come in and get the CHOP and Neulasta shot that Aj gets, how how much would that cost.
He said, CHOP, Neulasta and lab work costs around... $10 000 - 11 000 per treatment... times 6 or 8 - its a lot.. wow... can you imagine not having insurance and have to do this, it would be impossible!
Tomorrow Aj has chemo in Dr. H's office in the morning and then at Seton on Friday as well as Neulasta shot.
Aj is a trooper, I am so proud of him. He is so fantastic - the way he is handling everything and being positive and strong. All I can do is support, but he has to do all the hard work - treatments and medicines and god knows what.
Time to get some sleep...
Tuesday, March 2, 2010
Losing more hair
Aj said that he notices hair coming off, but its not like in chunks or anything. If I look at his head, I can't tell that there are any hairs missing :).
He went to see Dr. Hellerstedt today, told me I didn't have to come and of course it feels weird when I am not there. I feel like I always have 100 questions to ask and want to make sure we get answers. So I sent a bunch of stick it notes with questions for Adrian to ask instead :). It was just a check up and Dr. H said the same thing as Dr. F yesterday, he is responding well and so far so good.
Since he is going to receive CHOP in the bone marrow too now, he will go for the IV on Thursday at Dr H's office and then to Seton (hospital) to get it in the bone marrow. The reason for doing the bone marrow as well as IV is just to cover all bases basically.
Tomorrow morning is 'port cath' day. We have to be at the medical center at 9.30 for surgery at 11am. The nurse there said he should be done and out around 1.30pm. I know Aj thinks its a little weird doing this port thing, I'm sure it will take a little bit getting used to.
More to come tomorrow...
He went to see Dr. Hellerstedt today, told me I didn't have to come and of course it feels weird when I am not there. I feel like I always have 100 questions to ask and want to make sure we get answers. So I sent a bunch of stick it notes with questions for Adrian to ask instead :). It was just a check up and Dr. H said the same thing as Dr. F yesterday, he is responding well and so far so good.
Since he is going to receive CHOP in the bone marrow too now, he will go for the IV on Thursday at Dr H's office and then to Seton (hospital) to get it in the bone marrow. The reason for doing the bone marrow as well as IV is just to cover all bases basically.
Tomorrow morning is 'port cath' day. We have to be at the medical center at 9.30 for surgery at 11am. The nurse there said he should be done and out around 1.30pm. I know Aj thinks its a little weird doing this port thing, I'm sure it will take a little bit getting used to.
More to come tomorrow...
Monday, March 1, 2010
White blood cell count on a high!
Kind of short today, really tired (this was last night) :) I will update this post later on today with all details.
Aj has responded well to treatment and therefor Dr. Fayad sees no reason to take him off chop. Dr. F said he would be crazy to change it since it seems like its working. He did mention that it was going to be administered directly into his bone marrow like in a lumbar punch as well as the IV. I think this is just to target the bone marrow more.
The reason he says that Aj is doing well is because he is feeling better, if the chemo hadn't been working, then he wouldn't feel so good.
Between cycle 3 and 4 we will go down to Houston for a quick visit to do a bone marrow biopsy & PET/CT scan and then see Dr. Fayad a week after that. That way they can really see what the chemo is doing and how Aj is responding.
PET & CT scan were all negative, no other activity than the one we already know about. :)
There are a couple of tests that Dr. Fayad wants to do if he can get the paraffin block or unstained slides from Seton. Tests: Survivin (which is how it sounds, the cells/tumor prone to survive) and to look for C56 - on outside pathology - outside of the bone marrow. If he is C 56 positive and/or survivin positive then he would be a candidate for bone marrow transplant. (these are just medical terms that he was using and its the molecular built of the cells)
If he has to do a bone marrow transplants, Oliver would be the first person that they look at, its only a 25% chance that he is a match. The girls are only a 1% chance. Dr. F said that if Oliver is not a match, then they would look for a donor. Family members would be out. I said about the stem cells that Oliver and Ale have but he said that even if it was a match, it wouldn't be enough. Its such a small amount in there that it couldn't make up for how much a grown person needs. I find it amazing that even Oliver would only be a 25% chance of being a match. Dr. F said that the donor bank should have a lot of options for Aj though.
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