Friday, April 30, 2010

Friday and a move up to the 6th floor

First off, if anyone wants to see him that's fine, but no food. He did not even want people coming but I told him that he has to allow people to see him because since he's adamant that he not have a service or anything, he has to allow people to see him and then he said it was okay. Just be aware that with the increased dosage of xanax that he is more mellow and sleepy. He is NOT on any morphine at this time, and I do not believe he will be asking for any unless he really feels he needs it. He wants to be awake and alert for his visitors this weekend. He also recognizes that asking for morphine is really the start of the next phase and I believe that while he does not want additional treatment, he is not quite ready to do that.

When we left him he was comfortable and resting. He's the only patient on the floor right now so I'm sure he will be happy to have the nurses undivided attention. We discussed that he will stay on the same medications and receive the same treatment. He will always have the option of being taken back down to oncology, but I would be surprised if he did. He can also ask to be sent home and then he would get care here at the house but I think that unless he has a big desire to see the cats again he'll probably want to stay there.

Lastly, there are no time frames. This could go on for days or weeks. I spoke to his mother this morning and explained what was going on so now we are all on the same page.

Thursday, April 29, 2010

Thursday

The first doctor we saw this morning was the pulmonologist who felt that despite what the other (apparently the resident got in a lot of trouble by asking an "outside" doctor for input) pulmo doctor said that he felt it was a mucous plug instead of the tumor growing that caused his lung to compress and stop working. The tumor has infiltrated and has compressed on the airways but that does not seem to be the sole reason for the collapse. He then suggested that we consider letting him go in with a scope and clearing out the mucous, but the problem with that is that we would have to put Chris back on a tube and, given his condition, and the fact that he recently received chemotherapy, do not lend themselves to a good outcome.

On one hand there's an opportunity to improve the quality by letting the doctor go in and clean things out, but since the lungs will continue to create the mucous, we would be fighting a battle that we cannot win.

When the oncologist came in to see us, she said she had been trying to talk to the pulmo doctor because she wanted to find out for sure if he had to be intubated. She felt if he did not it might be worth trying because if they could get the lungs inflated again they might be able to do some targeted radiation on the tumor, strictly for palliative purposes.That in turn could buy time enough to get another round of chemo in him with the goal still being to get it to the point where it could be maintained.

Before talking to the oncologist, Chris's palliative doctor's resident adjusted his medication so he can get morphine once an hour if he needs it and also can get some morphine in his breathing treatments, all in an effort to get him to stop feeling like he is going to stop breathing at any moment. It's this level of anxiety and also a touch of depression that's gotten Chris to the point where he decided today that it's time and he has asked to be moved to hospice. I asked him if he wanted to come home or if he wanted to stay in the hospital and that's what he said he wanted.

He always has the choice of coming back to oncology and can opt to take his chemo should he want it in a few weeks, but at least in the hospice unit he will find it very peaceful, and will not be interrupted at all hours of the day and night. He will also be made very comfortable so that he will never, ever be in pain, suffer or worry from here on out.

Wednesday, April 28, 2010

Wednesday

I will talk to his oncologist and primary doctor tomorrow. After feeling a bit short of breath (as I gathered from what the nurse's said) they ordered a chest xray which then showed something they wanted to take a closer look at so they ordered a CT scan which shows that the primary tumor that is located in the lower right lobe of the lungs has grown and has infiltrated the upper part. This has caused the right lung to stop functioning and given that the left lung is not working at 100% the prognosis is not good unless there is something that can be done. I do not think radiation will help and we know he cannot be given chemo again for another 2.5 weeks so at this point we all need to start thinking about making him comfortable.

If I did not reach out to you directly by phone or email I apologize, I had a few people that I had to talk to tonight as well and I'm all talked out. I will be down at the hospital in the morning.

I got the notification today that Chris was approved for social security disability but his payments would not start until September.

Tuesday, April 27, 2010

Tuesday afternoon

Double Cheeseburger and part of a chocolate shake are better than nothing.... tomorrow they will discover that Chris is eating very little when they start doing a calorie count on him. I don't think they realize it because he probably eats a bit when they are there and then they leave and don't notice later that the plate still has the same amount of food on it.

Otherwise no changes and no word yet on when he will move. Still thankful he has not exhibited any side effects from the chemo but he still has the chest congestion/fluids that continue to bother him. I'm not sure that there is anything that can be done about that since it's something that all lung cancer patients experience at one time or another. All we can do is hope that the chemo will shrink the main "spot" (yes apparently one doctor defined a 6mm tumor as that) enough to reduce the fluid buildup. I think I mentioned that already.

I also changed his phone settings again so that the phone will vibrate and ring. I also changed our phone plan so we now have texting, something I'm trying to encourage Chris to do because it's very hard to hear him. If you do text him and don't get a response it's because he did not check his phone to see if he has messages. Hopefully a few more days and he'll feel comfortable with it.

Monday, April 26, 2010

Monday Evening

Still the same but now Chris won't drink his ensure's because he thinks that's causing him problems breathing. He also won't eat today so I will have to see what happens tomorrow and then talk to his doctor to see what we need to do. It's not a lack of appetite, he just decided that when he drinks them he thinks it goes into his lungs. Either way, he's got to eat so if anyone goes to visit please bring him something, even if it's a Jr bacon cheeseburger from Burger King... I tried to explain that if he does not keep up with the shakes his INR count is going to get out of whack and he'll have to go back on the shots but he does not want to listen to me. I then told him I was leaving since there is no reason why I'm going to sit there when he's behaving like a child.

Sunday, April 25, 2010

Sunday

Chris was a bit tired today but otherwise feeling no ill effects from the chemo. For some reason he responded a lot better than expected to the neupogen shot because his white blood cell count was 42,000 today and yesterday it had been 15-16,000. Given the fact that the drug is asking the body to produce more cells and that he's been on steroids for a while it is not likely to be an infection, but instead just that his body responded super fast to the drug. As such, they will not be running blood tests on his counts for a few days but will still be monitoring his INR. I did not ask what his number was today, it was a bit stressful this morning because Chris was upset that when he called the nurses earlier they did not respond right away so he panicked. Two xanax later he was starting to feel better and took the rest of his medication.

I still do not know when they are planning on moving him.

Saturday, April 24, 2010

So far so good..

No nausea, no upset stomach, no differences which is good. He was given a shot of neupogen which is similar to Neulasta which should help stimulate the bone marrow to produce more white blood cells than normal. This should hopefully prevent Chris's blood cell counts from getting too low. I was unaware they gave these shots proactively, normally they do it prior to the next round of chemotherapy if the blood tests indicate a problem but I guess these doctor's like to give them anyway. He gets one shot a day for three or four days. He's also starting back on the cumaudin and should be off the lovenox in the next few days. As long as he continues to eat/drink consistently his INR should level off.

No word yet on how long they will keep him, but it's looking more likely that they will move him to the same place he was before unless we can arrange to get nurses in here three days a week for 12 hours a day.

Visiting

Chris can have visitors between 11 and 8:30. It's probably better to try to see him within the next week if you can because at some point his blood counts will make him more vulnerable to getting sick. Right now he is okay though because it's only the new cells that are being created that will be "missing" in about two weeks. He is in the oncology "special ward" section on the second floor, room 240.

Friday, April 23, 2010

Post chemo update

They finally sent the drugs up from the pharmacy after 2 but due to some other issues in the ward they did not start the session until around 4:20. It seems that for a ward that rarely sees much action there was a lot of activity and even a patient that requires constant supervision. There were also a number of patients who needed to be sent off for various tests and since there are two nurses, one assistant and no receptionist they have to handle all the scheduling and transportation things that come up. Yes, you do call transport when you need to have a patient go from point A to point B and just like calling a cab or AAA, sometimes you can be waiting a really, really long time!

The first part of the chemo was a decadron drip along with some heavy duty anti nausea drug that starts with an A (I will eventually remember it) and has 5 letters in total. Once that was done, the IV was flushed and the Alimta was given. The distribution rate of the Alimta is quite fast and it takes about 10 minutes to distribute. After that was done, the IV was flushed again and then the Carboplatin was given. That is distributed at a much slower rate, so it took 35 minutes.

Now, a brief description of the two cancer drugs and what they do. Hopefully I can explain it so it makes sense. Keep in mind I failed chemistry and my biology grades weren't much better (mostly because I could not draw what I saw in the microscope even if I can still picture what those silly cells look like today).

Alimta is an antimetabolite drug. Antimetabolite drugs contain things that are similar to substances we have in our cells. When the cells absorb the Alimta into it, they are unable to divide so they will die without reproducing. Alimta likes folates, hence the reason why patients who take it must supplement their diet by taking Folic Acid. Alimta targets cancer cells at a specific point in their cycle which has to, by definition, be different then what the other drug does. There are ongoing clinical trials now where they are actually looking at using three different types of drugs each targeting the cells at a different point in their cycle. I think Alimta targets it when the cells are active.

Carboplatin (yes it does have platinum metal salt in it) is an alkalyting agent. Carboplatin causes cells to commit suicide among other things. This drug targets the cells when they are in the resting phase, thus preventing them from ever reproducing. I have no earthly idea how the drug knows whether a cell is resting, dividing or active, but the more aggressive a cancer is (ie the more rapidly the cells divide) the more cells it will kill and thus the more likely we are to notice a reduction in the size of the tumor.

Chris tolerated the treatment very well and had an ensure as soon as the treatment was over. I will go see him later in the morning tomorrow to see how he's feeling.

Thursday, April 22, 2010

Before I forget....

Erica was nice enough to forward a picture of us from the last cruise so I thought I'd share it since Chris is actually looking into the camera! I hope that was okay to share it, Erica!

The revised title says it all

Game on! Let's go kill some cancer cells. If all goes well then he'll be on a three week cycle. I need to talk to his doctor's tomorrow to see what the plans are for next week, but it sounds like they will look to move him at the beginning of the week. Given that nobody has talked to me yet about discharge plans I'm not sure exactly when he will go, but he mentioned going back to the same facility. That's all well and good but what good is rehab if all you are going to do is lie around? He said to me that the reason he did not rehab well the last time is because of the radiation and I said what do you think will be different this time? The side effects of Alimta are fatigue, but he says he knows that he is going to have to do something. I might see if it would be possible to get a nurse in here instead, if it's cheaper for the insurance company then they might be agreeable to it.

So, that being said I am going to kick back, relax and get ready for tomorrow. I will go down to the hospital early and bring my laptop and try to do some work while I hang out with Chris. It will be a long day, but hopefully get him on the right track and move towards alleviating some of his anxiety and fears.

Orders for chemo

The doctor has agreed to write the orders for chemo and will leave it up to Chris to say when he wants it. He is cleared from the pulmonologist's perspective and if it were not for the chemo, he would be ready to come home or go to rehab so he's going to have to make a decision tonight in terms of when he wants it.

She has said he is not a good candidate for chemo, however, he made it clear to her that he would rather die trying than not try at all so we are all on the same page. I told her that we have realistic expectations and that this could be a bad outcome but at least then we could say we tried. It certainly beats the other option which is letting Chris lie around worrying about the next time his lungs fail.

Wednesday, April 21, 2010

Wednesday night

Chris had some fruit and cheese for dinner and most of his chocolate ensure so he's back on a solid food diet. He told me that he has a lot of work to do with the physical therapist over the next few days and is ready for it. It seems his doctor arranged to get him moved to the oncology section and that his oncologist does not know at this point that's where is is, but I guess she'll be clued in real quick when she goes to find him in the morning. I suspect she's the most conservative out of the group, but since she was ready to hit him with chemo last week when he did not look too good in her opinion and actually looks better now, I'm sure she'll come around. His primary doctor mentioned that she thinks it will be another week before he will be ready. He also made a point of telling me he's gotten used to being stuck with needles and now that he understands what subcutaneous is, he does not complain too much about the lovonox that he gets in the stomach.

The section he's in is very nice, and instead of those stark white walls, his is a light, peaceful green. He's also got a small flat screen tv with sound that you can actually hear. The guest chairs are a lot more comfortable and one is even a recliner so people who come to visit can actually take a load off. Visiting hours are 11-8:30. I'll stop by to see him tomorrow after work, but not sure yet if I will come home first or go straight from work. It seems like it sort of takes the same amount of time.

I just got a phone call from Chris

Saying he's been moved to Oncology so hopefully that means that in another few days they will be able to start chemo. There is always a chance that his body may not be able to withstand the drugs, but if we don't get them into him there is no chance of restoring some quality to his life.

That being said, his getting out of ICU is incredibly positive and I will go see him this afternoon.

I do not know if oncology requires that we wear sterile stuff or not but I will update when I'm home tonight.

Update - HE IS IN ROOM 240. He called me to ask that I have his television activated....

Tuesday, April 20, 2010

Thanks to Aunt Sue for noticing

That Chris can be sent an E Card..

http://www.saintbarnabas.com/ecards/CategoryItems.aspx?CategoryId=11

That's the address, so if you want to send him a card, pick one, fill in his name, he's in 430 and he's at Monmouth Medical. If you are not family and need the spelling of the last name shoot me an email. With the blog being open I don't want to publish too much information at one time.

I would also say that once Chris is moved I will let people know about visitation. They are very liberal and don't seem to care who visits or how many people show up in ICU, but it's a really stressful and depressing place to hang out so you are better off waiting until he is in a room and away from ICU. For someone as sick as he is, he gets the award for being in the best condition.

Tuesday

All's as well as can be for someone who was on a ventilator for five days. We had a talk when I got there this morning about what he would think about getting chemo while he is in the hospital. He is well aware that his lungs may fail again and is aware that without trying anything he has no chance of getting better. We talked it over with the oncologist who came to see him and also with his primary doctor and are all in agreement that if it is at all possible he will be moved from ICU to the oncology department instead of the telemetry unit. I don't have any idea when that will be, as of now, they are waiting to put him back onto a food diet.

I will go see him after work tomorrow. Chris has his phone but was very tired today so if you do want to talk to him please wait until tomorrow! I'm sure once he's rested a bit more he'll be up to talking on the phone.

Monday, April 19, 2010

Please hold.....

This is Matt from Monmouth, Chris needs to speak with you hold on...... "Sweetie" I said "What's wrong" he says nothing, please go get lottery tickets.

He's back to himself.

Monday and breathing on his own own

The ventilator came out just in time for Chris to watch Dr Phil. The feeding tube came out a little while later and we left about 30 minutes ago. He gave me a list of things that he wants for me to bring tomorrow, his phone, his ipod, his headphones, his pulse oximeter and batteries.

The doctor says they do not know for sure what happened but given that he responded to the antibiotics they have to believe there was an infection.

So, the news is good! Let's keep hoping he can get well enough for chemo.

Sunday, April 18, 2010

Sunday night

Chris is doing most of the breathing on his own but they will wait until tomorrow to take him off the ventilator. There's a bit of fluid on the bottom front right part of his lungs that the pulmonary doctor wants to see clear up a bit. I believe if they can get him off it that then they can possibly figure out what's going on. They said it's difficult to tell from an xray exactly what's going on.

He asked me earlier how long he'd been in the hospital and was surprised to hear it was five days.

So, keep your fingers crossed they can get him off the ventilator and see what's going on. If it's not pneumonia but he can breathe maybe they can look to get the chemo going. The oncologist said no cumaudin for him until he's off the ventilator so he was given lovonox which I'm sure has made him about as annoyed as having the tube in his mouth because he hates shots.

Saturday, April 17, 2010

Saturday

They started turning back the controls on the ventilator, but there is no set time for when he'll be taken off of it. I have no idea how much assist he's getting but the way the therapist explained it, there are a specific number of breaths per minute the machine forces but above and beyond that the patient can breathe on their own. The few times he adjusted it Chris's number continued to stay solid. He slept most of the time we were there but I woke him up before Sue, Lizzie and I left and then he stayed awake while my mom and Kellie entertained him for a while. His hands are not tied any longer and other than occasionally grabbing at the tube that's in his nose he's being very tolerant.

He's still being given a fair amount of versed so he's pretty sedated but he's not complaining about pain or being uncomfortable. They also moved him onto an air mattress so he's more comfortable as well.

Friday, April 16, 2010

No changes

Other than being more alert, Chris is still the same. He is very tolerant of the tube, but is quite uncomfortable with the bed. No change in the status of the lungs, the infiltration is still visible (but they still believe it's pneumonia).

Friday morning

We will be going down to see Chris in about an hour. I probably missed the oncologist, but at this point there isn't anything he needs to talk to me about so it's just the pulmonary doctor we'll want to talk to.

His niece will be arriving later this afternoon and my other aunt will be coming down to the hospital this afternoon. My sister will be coming down later as well and will go right to the hospital. I made a reservation at Bahr's for dinner so for you local people if you are around and want to join us or meet the family please come on by. We will be there between 7 and 7:30.

Thursday, April 15, 2010

Thursday afternoon

Sedated, stable and comfortable. No other changes.

No news yet for Thursday

Mom and I paid a quick visit to him last night where he did respond when spoken to. Given the amount of sedative he's on, it's easier to talk to him for a minute, squeeze his hand and let him go back to sleep. They have him on versed (SP?) because there is a nationwide shortage of propaphol, and I have no clue what that means in terms of what one does versus the other. When he said he was in pain yesterday they gave him some morphine so I guess it's everything to keep him quiet and sleeping while the lungs heal. We'll find out today about a feeding tube, something that they will need to do if they are unable to remove the ventilator.

Wednesday, April 14, 2010

Pneumonia!!

Unbelievable luck that we caught the pneumonia because if we had not the chemo most likely would have done irreversible damage.

Essentially, after arriving by ambulance at the hospital and being given 10 liters of oxygen, to which he did not respond like they wanted, they gave him some kind of assisted breathing machine and he had trouble with that because he said he could not cough. A short while later one of the resident doctor's came in and said they wanted to put him on a ventilator but gave me some song and dance about how they thought it was another pulmonary embolism and that if it turned out it was he might need surgery. I then told him that unless the request to put the ventilator came directly from a medical doctor I was not going to agree so while they went to get him on the phone the respiratory therapist told me that basically if we did not go along with this we would lose him as his lungs were failing. That being said, I opened the curtain pointed at the resident and said "go ahead" provided you sedate him first. I then told Chris that I wanted to let them put the tube in until we knew what was going on. I promised him that as soon as I knew what was going on we would be able to make a decision. He agreed and once they sedated him they put the tube in. Then they took him up for his CT scan, then they took him into ICU, then i sat around for a while.

My brother and sister in law came to visit and so did my sister. My mother is on her way and my aunt (her sister) will be arriving tomorrow. My brother in law will be arriving tomorrow night so Chris will be surrounded by someone other than me for the next few days.

We are looking at a minimum of 10-14 days before he can begin chemo.