On the move!

This blog has been moved over toLungcancer2010

There will be a new forum launched that will be used to share advice with people who just find out their loved one's have cancer and hopefully we can get others to join in. All the posts from here have been imported there so please bookmark that site.

Half of advanced lung cancer patients receive chemotherapy | Health, Medical, and Science Updates

Half of advanced lung cancer patients receive chemotherapy | Health, Medical, and Science Updates

I'm updating through here while I get the web site up and running.

On the off chance

Anyone who still checks in here every so often and wonders what is going on, all is okay.

I have started to reach out to people regarding participation in a non fiction book that I hope can be turned into a screen play. I figure we sat through all the Angels In America plays and cancer is as powerful a subject so it's about time the stories were told.

Outside of that, GiGi's having a great time in a pasture although she told me she wonders why the other mares are a different color then she is. Here's a recent picture of her.

Friday and some humor

This is around the time that I would hear "It's not our fault you broke the rules and dressed in clothing that did not stand out" ..... yes the British always blamed us for figuring out how to stop sticking out like a sore thumb. If you are in the woods and dressed in red you will always be spotted but in camouflage you don't.

Happy 4th to all my American family and friends and for my English friends I can assure you we hold no hostility over what happened all those years ago!

And in an unrelated but related post, when my mother and David were about to get married I had to schedule everything "beauty" around the breeders cup. Shortly before that race was run, David came in, asked who was running and stated "It has to be Black Tie Affair" because we are having one". He was right, the horse won and the horse lived until yesterday when he was euthanized due to cancer and the infirmities of old age. Grey horses are prone to skin cancer and they are treated similarly to humans.

He outlived David by just over a year but it is the little moments like this that, despite how sad they are, make you remember the joy and happiness that we all felt that day.

Monday

Sorry no update yesterday, did not think about adding it here because the only feedback I get is on facebook.

We had a nice turnout and I think everyone had a great time. We toasted at 2 and the phone broadcasted to British Columbia so there were a bunch of people who participated who did not know Chris. Geoff has a picture on his phone.

Thank you to all who came out, I am sure Chris is very happy, wherever he, is that people came out to celebrate his life or people stayed home and drank and some set their clocks and woke up and a few stopped what they were doing and raised their glasses to someone they only knew about from me.

Love and hugs to all!
Stacy

The toast

There is a paragraph before but this is the actual toast part..

"And now it's time to raise our glasses high, take a deep breath and say out loud, Cheers to you, Chris. You've enriched our lives in such a way that you'll never really be far away. The years will come and years will go, but your memory lives on forevermore."

One day to go...

Hopefully we can get one of the cameras here (check the left side of the page) pointed at Off The Hook so at 2 tomorrow when we toast everyone who is not there can go here Highlands Web Cams and we can toast together. I have not heard from one of the DJ's who is on the air at that time but if I do they should announce it around the same time! I will update if I hear back because you can listen on the internet as well.

Directions for Saturday

I believe Off The Hook is considered 1 Navesink Avenue instead of Route 36 which is the highway.

If you are coming from the north, it is exit 117, bear left after the toll and get on route 36 and stay on it until you get to the big new bridge. Just before it you will see Off The Hook on the right.

From the south take exit 105 from the garden state parkway, getting on Route 36 east (yes I know its the same name as the one further north), pass Monmouth Park and then when you get to Ocean Blvd turn left and go north through Monmouth Beach and Sea Bright. Go over the big new bridge and turn right at the light because you have to come back under the bridge to get to Off the Hook. Go down Miller Street to the stop sign which is Bay Avenue, turn right, go under the bridge, turn right and at the top of the hill the restaurant will be in front of you.

If you are coming by ferry please let me know so we can pick you up. If you want to walk it's about 20 minutes.

If you come by train, Middletown is the train station but please call me by Friday so we can make arrangements to pick you up.

Looking forward to seeing everyone on Saturday.

Weather forecast

Let's hope the partly in partly cloudy is in the morning, that tends to keep the masses away until later in the day or makes them procrastinate until Sunday.

Weather forecast for the 26th says:

Sat
Jun 26

Partly Cloudy

82°
67°

20%

Horse news

GiGi scanned in foal so next April there should be a little foal running around Lexington. Her official due date is April 30th. It's nice to have good news for a change and something we can look forward to.

Four weeks ago

It's four weeks since we lost Chris and the plans for his celebration are coming into place. I think we've finally gotten a hold of all the right people and those that don't know will when they see the invitation in some of the neighborhood bar windows. There are also some invitations that have been sent to people in NYC so I hope that some of his former commuter friends and work "building" friends will make it.

Just a reminder that if you need a place to stay please let me know. We have some other places that have beds people can use. We can also arrange to pick up/drop off at the ferry. The 11 AM ferry from Pier 11 will arrive at 11:50 (unless they change the schedule between now and then which is possible).

invitations printed

I am either emailing or handing out the invitations. They are nice and simple and exactly what Chris would want. I'll turn it into a jpeg and upload it here.

And don't forget if you cannot make it there will be a toast at 2:00PM.

There is no RSVP required for the event.

The completed poem

I can't find my printed copy so there's one verse that's slightly off but nevertheless it is finally finished.

We never get over, we just get through, and wherever you are and wherever you go, the 
place in my heart that holds you so close just wants you to know it will always love you so.

No matter the emotion it's always clear that on this day we hold you so near so whether
or not you thought we'd forget that's not in the cards. So like it or not you need to let, your friends,
your family, pay their respects. For you are, forever and always, one of a kind and there you shall
stay, always on our minds. We wish you the best and you must never forget that there are memories of sorrow, memories of pain, one's of pure joy and one's that never fade away.


Most important of all and I wish to speak on behalf of us all, the love we have will forever remain, like the rising sun in the east, not the setting sun in the west.

We've all gone home

It was a very emotional time for us all, and on Thursday after all had been said and done it really hit us. I don't know if it would have been any better if the funeral had been on Tuesday instead of Wednesday, but at one point it became clear that we are not going to be able to attend another gathering in a church anytime soon so we will instead opt to celebrate Chris's life with a party at Off The Hook.

I encourage anyone who cannot attend but wishes to pass along words of remembrance to please fill out the online book that's attached to his obituary. We will then print those out and attach them to the memorial book that we had at the church.

While I wait to confirm the details, it's important that everyone know that there will be the worldwide toast to him so if you don't come down until later in the day that is fine. We will try to make arrangements to transport anyone from either the ferry or the bus so please let me know your preferred method of travel. For cars, if it's a nice day you may be sitting in a fair amount of travel so if you want to come down early we can arrange to have a gathering for breakfast at my house.

In the interim, below is the poem I wrote for both Mother and Chris. This is separate for the one I did for him. Somehow when I had finished the one poem I felt something was missing so I wrote another one morning.

I Never thought there'd come a day
where we'd be drawn in such a way
to grieve at once for a devastating loss
of two most amazing people
and all that I can think to say
is thank you both for enriching my life
I love you both so much and now that it's been said
I'll raise a glass and toast to you both with one simple word L'Chaim
which means to life.

New date

The new date is June 26th.If you would like to come down the evening before and stay please let me know so we can make arrangements for accommodations. Otherwise earlier is better unless it is cloudy or rainy. Unfortunately after Memorial day traffic does pick up a lot.

My mother in laws obituary is in the daily telegraph (A UK publication) but you might need to search for her since that is how we found this.

Tomorrow afternoon is her funeral. 

The Obituary

http://www.legacy.com/obituaries/app/obituary.aspx?n=christopher-t-vickery&pid=142718576

An edited picture for his obituary

Hey, this works really, really well with windows 7. I must say this is about the coolest feature Windows has ever released.

Some more sad news

We lost my mother in law this morning. I do not want to speak for the family on this event, but there are a few things I would like to say.

His mother has had a heart condition for many, many years and despite the doctors urging her to undergo a bypass she refused and instead decided she would live as long as she could without that intervention. She was given the option of a pacemaker last year and decided that was viable and sometime between Chris's last visit and Geoff and family arriving, she had one put in. I think all who saw her the past eight months would say she was a lot better and was really able to enjoy the rest of her life.

We will be postponing Chris's remembrance/celebration for now. Once we have the details firmed up we will post them here. You can also click on my name on the post to send me an email. Since this blog is spidered by google I don't want to advertise any specifics, but that name should give you the address to use.

The one word that came to mind this morning when I heard the news was speechless. I do not know what else to say about what's happened, but the family will all be together and that's something that both Chris and his mother would say is so very important.

A big hug to everyone, I will post another quick update when I know the details of the funeral.

Donations

I've been asked about making a donation on Chris's behalf. Chris loved Highlands and we always supported our local volunteer organizations. So the first one is the Highlands First Aid Squad at PO Box 173, Highlands, NJ 07732 They were the one's to respond and transport him the first time he went to the hospital and did such an amazing job in keeping him calm and making sure he was comfortable when they transported him. Our squad receives very little from the outside and relies on donations from the town to sustain themselves.

The other one is Cancer Care, which is the place that I reached out to after he was diagnosed. They focus specifically in helping people with cancer, caregivers, conduct seminars and also have a foundation that helps people financially with medications. We were very, very lucky to be in a financial position that this evil disease did not impact us, but it devastates so many other people. Their web address for online donations is:
http://www.cancercare.org/support_us/
Their web site is www.cancercare.org

I will know on Monday about being able to use the stone church. If it is unavailable we will just meet at Off The Hook at 11:45. We will arrange for food and I'll see what can be worked out for alcohol. I hope to have the room upstairs for use, otherwise we'll sit outside.

A Short poem

I've been writing a bit, but wanted to share this short bit with everyone. Thanks to Mike for making me stay awake on Saturday night and letting some of my ramblings lead to something short and concise and, I think, appropriate for now.
 
We never get over, we just get through
and wherever you are, and wherever you go
the place in my heart that holds you so close
just wants you to know it will always love you so

Gathering will be May 22nd

We will have it on May 22nd. I'm waiting to hear back from All Saints Church in Navesink about the 11-11:30 service that Chris wants. If not we will start at 11:45 at Off The Hook in Highlands.

If you would like to come and will be arriving by ferry or train please let me know so we can make arrangements to get you to/from your arrival point. If you would like to come down the night before or stay the night of also let me know, we will take care of that too.

And for the coincidence of the day, the name of this church is the name of the church where Chris's father was a Vicar and the Vicar of the church where Chris wants the service is in England this week.

Afternoon update

Mike is on his way home and Geoff should be arriving at JFK anytime now for his flight back to Vancouver.

I am working on when there will be a "gathering" and celebration, it is tentatively set for May 22nd at 11 AM at one place, followed by a trip up the street to one of our local bar/restaurants where we will celebrate his life. If you are unable to make it because you are in another country, or continent we will try to coordinate a time where we will all raise our glasses and toast to Chris.

I want everyone to know that I will be fine. I have spent every day since the end of February running around and making sure Chris had what he needed. I always took some time for me, but now the difference is I don't have to look at a clock and go "I have to leave in xxx minutes". I have invited people to visit tomorrow afternoon/evening and the door is open through the weekend for anyone who wants to come by. I'm quite tired as you can all imagine and will hang out for a bit and then head to bed where I am sure that I will be able to sleep until about 5:00 which is when I usually wake up.

Never gave up

I'm sorry to report that after a 15 hour fight with a body that was ready to give up we lost Chris at 2:08 this morning. I had asked him on Thursday when he said he was ready to go to hospice that he please hold on until Tuesday and he did just that. For someone with one functioning lung and a heart that the doctor's had been concerned with he just fought and fought and fought for hours and hours. I believe that up until the very end that he was able to hear us because periodically as we would be talking in the room we got some kind of reaction.

I apologize to Chris's former co-workers who came to pay him a visit only to find him as he was, but please know he did hear you even when he was unable to respond.

It's almost 4AM and I am going to finish my drink and head to bed.

Thank you to everyone for your well wishes, thoughts, prayers and anything else that you did to try to help him beat this evil disease. While his wish would have been to share his organs, unfortunately, that is not possible with cancer patients. At best, his corneas might be of value but since nobody came to see me I am going to say that won't happen either.

Love to all and I hope that you take comfort in knowing he did not suffer and that he is absolutely 100% adamant that his life be celebrated. We will be organizing a short "gathering" on a Saturday morning followed by a party at our local bar/restaurant where we will share good memories, and honor his memory exactly how he would want it.

Good and bad days

This was definitely, in my humble opinion, a good day emotionally for Chris. He got to spend time with his brothers, good friends and some of my family. The sense of humor is so very in tact and in a way, someone must be feeding him new jokes because today he asked me to tell people one's that I never heard before.

After talking to Chris about the breathing treatments he's been getting I asked him to please consider one that has morphine. Morphine, when it's used as a breathing treatment, is different than taking it in IV form as it is not systemic. I did notice that after taking it and then nodding off, his breathing seemed a bit more at ease.

Tomorrow will be another emotional day for Chris, but one that will be very meaningful.

Less than 40 minutes until post time

For the derby so a quick post to say that Chris had a good day. No changes but he was given a new medication that has eased some of the discomfort in his chest.

His brothers are here and we got word late last night that his mother was taken to the hospital. We won't have answers as to how she is and what is wrong until they are able to perform an endoscopy and/or a colonoscopy. She is comfortable and got to speak to Chris although I'm not sure she was really able to hear what he said.

Off to get ready for the derby, we will be hanging out today and enjoying a nice bottle of bordeaux at Chris's insistence.

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

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

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 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 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

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.

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.

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.

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 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....

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.

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 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

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.

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 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.

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.

Some breathing difficulties

I may need to take him to the ER for some extra oxygen. Our only go up to 5liters and we do not have the full rebreathers which is what he needs when he has these episodes. If you do not see a more recent post it's because I took him down and you can reach me on the cell phone. If I do take him, I will update here or have someone add comments to the thread. He may just have some fluid building up which is, unfortunately, one of the major problems with lung cancer.

Updated Cumaudin

As expected, there is an increase from 3 to 5 for today and then he'll stay on 4 while they test him next Monday. I expect that should be fairly stable now that he's drinking three ensures and eating. The ensure's actually have a fair amount of Vitamin K which is okay for him to have, as long as it is consistent. He'll also go see the doctor on the same day as the pulmonary doctor and then on the 7th he should be ready for his second round of chemo and a visit with the radiation oncologist.

Tomorrow I'll have to make sure Chris has his breakfast because even though he tells me he'll go find something to eat, he doesn't so the only way to make sure he eats is to put the food in front of him. I gave him a mug of pea soup when I got home at 5 and then gave him two Nathan's hot dogs and some baked beans at 7:30. Then he drank the third ensure of the day. He also nibbled on a bunch of dark chocolate dove squares so one way or the other he's getting over 2,000 calories a day right now. Hopefully that puts us in a great position for the start of chemo.

Tuesday

I've left a message for the doctor to find out if Chris's cumaudin needs to be changed and to also find out if she wants to see him. I also called his former pulmonary doctor to let them know he would not be returning next week and despite my explaining to them why, they still called Chris at the house to ask him about it. Naturally he told them to talk to me. Why they would even want to force him to answer questions when he has no voice is just plain egotistical. If they do call me they will get an earful as the results of Chris's PET scan from March 8th specifically reference what appear to be clots in the lungs. I would not expect an oncologist to notice pulmonary lingo when they are explicitly looking for cancer terminology, but I would expect a pulmonary doctor to so they will be very unhappy with the action I will take if they do bother me or him again.

He will go see the pulmonary doctor on May 3rd, the one who saw him when he was in the hospital.

Monday Monday

Chris had a great, English lunch thanks to Aunt Rachel who went to Myers of Keswick before driving out for a visit.

There seems to be a bit of confusion at the oncologist's office because first they called to say his chemo is 11:30 on Friday but then they left me a message on my cell phone saying that the appointment was 11:30 but that they would let me know if he was still supposed to come in tomorrow... but since I called before I heard the message she told me there was no appointment. Then Chris called me when the nurse was here and said something about them wanting to put the port in Wednesday which makes no sense because he would have already had to get off the cumaudin and he would need shots in his stomach for 5 days in addition to needing some time to recover before the chemo. I called and left a message for the nurse but they did not call so I presume there's some confusion somewhere.. my feeling is that if there is a good response to the chemo and the risk of clots is reduced than they can always put one in. I suspect that since the doc had been planning on putting one in this week that they did not know when they called that it was not going to happen.

The INR count is slightly lower, at 1.2 but apparently that's a target number for people who are not on cumaudin (.9-1.3) so no clue what it means. Maybe the cancer cells are at a point in their cycle where they are doing something else other than aggravating the red blood cells.

An educational and serious post

There seems to be a bit of confusion when I talk to people regarding what Chris has and what we are looking at. Keep in mind that it is very rare to catch lung cancer before it has spread and that is one reason why there is such a small success rate in long term survival. There are also more people who have recently received the link to this blog and it may be easier for them to start here than scroll through all the pages. These posts are designed to keep people up to date with what is going on but is presented in a straightforward way so that it's easy to read and give you some insight as to what we are going through. I have largely refrained from presenting this as the glass being half empty, and I fear that may be giving people an unrealistic view of how serious this is.

Some background

There was a biopsy done on a small tumor behind Chris's left ear on Feb 23rd. Two days later we got a phone call and the ENT said he "did not like what he saw" but he did not offer any more details. Chris mentioned he was going for a bronchoscopy the next day, but due to the two day snow storm we decided to reschedule. The bronchoscopy was March 1 and when we went to see the pulmonary doctor on March 4th, he told Chris that it was stage IV lung cancer. The next day, he had a PFT which is a breathing test and then on the 8th he went for a PET scan that would be used to identify all the places that the cancer is in. On the 12th we met with the oncologist who said she feared we are dealing with a very aggressive cancer and as such, time was of the essence and we would need to get the MRI's done on the brain and the thoracic region, go in for the port, and essentially start treatment on 3/30. On the 18th, Chris had two of the three MRI's and later that day wound up in the ER because some clots had broken loose from the legs and wound up blocking some of the arteries in his lungs. All the plans changed as the radiology oncologist found some very, very small lesions in the brain, something that happens in a very high number of lung cancer patients and Chris underwent 10 treatments.


Fast forward to today, this is what we are dealing with. Chris is on cumaudin which will prevent new clots from forming, but all chemo drugs have a potential risk of bleeding, so he will need to be watched closely after his initial treatment. The benefits outweigh the risks at this point as there is no choice. Chris recognizes this to but we do not go into details.

Everything that can possibly be done for him is being taken care of. There is still a very high quality of life and he is tolerant of all the medications that he has to take. He's also put up with countless blood tests, diagnostic tests, 10 radiation treatments, scans and everything that needs to be done to prepare someone to battle cancer. In terms of the cancer spreading, one thing we do know is that between the third week of January when they identified "something" from a CT scan and when Chris had the pet scan on March 8th, the tumor had not changed size or shape so it could be that as the cells become less "differentiated" they slow down their rate of reproduction. That last sentence comes from someone who failed high school chemistry but I have learned that the more reproduction that occurs, the less and less it looks like it's predecessors and therefore maybe it gains more time before it has to divide again.

Sunday Morning

Gosh that throne is really comfortable! I waited until Chris got up around 5 and moved over to a chair before I moved off the couch and onto the throne where I had a nice nap. I'll be putting the roast into a crock pot with very little in the way of seasonings. It does serve a dual purpose, one of which I mentioned the other day, but the other, is as a baseline because if we know how it tastes without much spice and rubs than we can use it to build it up for next time. Chris finds that his hair is slowly coming out, something that the doctor's told him would happen, but since he did not have a full head of thick hair to begin with, it's not going to shock anyone who sees him.

We have some great soda bread that Colleen baked for Chris yesterday. I will take half of that, quarter it and then freeze it. The rest we will eat.

Time to change the water on the concentrator.... and then get the roast ready for the crock pot.

Saturday Night

Chris and I will be sleeping downstairs tonight as three times going up/down the stairs today have worn him out enough that I'm not sure that I want him to try it again. He's now resting on his new throne which is now practically flat and I should find out soon whether he's comfortable or not.

He would have been okay had he not decided earlier today to put the oxygen down and rush up the stairs in one fell swoop. He's supposed to go to the landing, rest and then when he catches his breath, move up again. Outside of a few physical therapy sessions I am not sure he did much moving at all when in the rehab place and I don't know what they did with him in the sessions.

He did have two meals today and three ensure shakes and almost an entire cadbury bar (one of those big square things) so that's a good bit for the day. Tomorrow I'll be putting a roast in the crock pot.

A nice breakfast

Fried egg yolk over white toast and some bacon and an ensure shake. I'm not sure what we'll have for lunch, dinner last night was the leftover hamburger meat sauteed with some nice vine ripened tomatoes and served over toast. A bit bland looking, I had to fight from reaching for the seasonings...... but it was okay for Chris. Since the chemo might affect his sense of smell I'd rather have him getting used to adding flavors after the food is cooked now.

Chris said he actually felt quite a bit better this morning and has been sleeping off and on since he woke me up around 5:30 to say he wanted to come downstairs. We need to change his fentanyl patch today and the nicotine one but he said he was not in a big hurry and when I mentioned that I'd like to do them in the afternoon to get the time more in line with when the next change is (the pain patch is every three days) he said that was fine. I'm headed out to get some folic acid in a bit.

Late Friday

Sorry for the late post, it takes a while to get things sorted in the house and when there are phone calls and emails and other things to do time tries to get out the closed windows (hint it got cold here today just when we thought spring was here).

There will be no port put in; long story short with the risk of clots they would not allow him to be off the cumaudin, he would be forced to endure shots of lovonox in the stomach and even if he were willing to do that, his breathing is erratic enough that no anesthesiologist may want to risk putting him under so instead we will try a round in the vein. First he will get Alimta and then carboplatin (it really has platinum in it) No Zometa for the time being as the doctor does not want to introduce anything "new" that could cause a side effect that might not be easily controlled. It's really amazing that when someone suffers from a breathing condition and we see them on oxygen and see them walking slowly or using a walker we automatically think "they are not well". This is true in Chris's case, but his blood work continues to indicate everything internally is still working. His WBC count is still the only number produced in the CBC that is slightly high. His platelets, RBC and anything else they consider key factors in ascertaining how well someone is are quite good. Again, it's worth mentioning that there is NOTHING in his blood that indicates he has cancer.  Just mind boggling that it can continue to play so well. There will not be another test done before the chemo begins, no MRI's, no PET scans, no CT scans and no xrays. There is no reason to believe anything has changed.

We all just have to hope that we are still dealing with something that can be treated.

If you called and left a message today and I did not get back to you I will tomorrow unless something comes up that I need to tend to (like remembering I must get him folic acid) If you are around and want to visit, 2-4 tomorrow or Sunday are good, but if another time is better, please call me first. If you call to talk to Chris please remember he gets winded easily since he has no voice and has to whisper and in turn whisper loud so he can be heard (he expends a lot of oxygen). He does not know how to text so that won't be a good way of communicating with him either.

Thursday afternoon

I must say that grass fed hamburger meat is really, really good and I will be ordering more from them next week, once we have Chris's menu established. Grass fed beef is higher in iron, lower in fat and does not lose shape or size when it's cooked (although I only made one so far so it's not really a big sample).
Shameless plug for US Wellness meats www.grasslandbeef.com. They were not much more expensive than butcher quality meat and even with the shipping/handling it was reasonable.They have lots of other stuff too... and I am going to try to get Chris to try the pemmican which is something they recommend for cancer patients because it has lots of nutrition and calories.

So yes as you can probably surmise, Chris had a burger today for lunch along with a few small slices of tomatoes and two small white potatoes (from a can). He's on his third ensure of the day and I hope to get him to eat some of a quiche in a little while. I've also got some ziti that I may heat up instead. He's nebulizing at the moment and recently finished his second beer. He's allowed two a day, one with lunch and one with dinner, mostly because of the extra calories. We also went out for a bit this afternoon since I needed to get the lower dose decadron that they were out of yesterday and also to get Chris a new electric razor. The other one is quite old and was bought at a store that's been out of business for quite a while now!

Tomorrow we will take a field trip to the oncologist in the afternoon. The office is across the street from Monmouth Park so once he starts chemo I can go visit some friends if it looks like his sessions will last for a while. I hope they have wireless where he goes because then he can use the itouch for things other than listening to my music (although he likes most of it).

Thursday

Chris was able to get up and down the stairs twice yesterday without requiring the oxygen. It seems he can tolerate about 60 seconds without it, although I have no clue what he should be able to do. He took his pills when he was supposed to and then we did the treatment at 11:15. The next one was supposed to be at 4 but Chris decided it could be later so I woke him up at 6 and told him it was time to start things. It took over two hours to get him to finish everything and I suspect the reason why he finally got on with the last one was he knew when he asked me for his nicotine patch that I was going to say I would put it on after.

Other than a breathing treatment and the last dose of mucomist Chris has the afternoon off. The VNA will be here at 11 and they said if they cannot find the INR machine that they will have to get QUEST to come out for the blood test. Chris can handle a real phlebotomist but I am sure he'd be happy if the finger test would work.

We need to go out later today, he needs a new electric razor, wants some cushion things for behind his ears and then also some glasses.

He's had two ensures and one half of a sandwich sized english muffin with butter and orange marmalade so far today.

Settling in

I only had to make three trips to the pharmacy but now we have everything that he needs. I spent over an hour trying to sort through his medications and put them in the right containers. Some are a bit more difficult because they are one strength certain days and different one's on the next. Those are one time a day so that's easier to keep track of. The liquid nebulizer one's we'll just track. The oxygen concentrators are very quiet so that should not keep us awake at night. They delivered a walker but also that silly commode. I have no clue what to even do with it but it will make a nice planter. It will NOT be an excuse for Chris to not have to walk 5 feet to the bathroom.

A two day "special" treatment for Chris means we have to get up at 11 or 12 and give him something so I'm glad I can work from home again tomorrow.

He's going to have a shake, then take his pills at five, then he'll go upstairs around 6 for a much needed shower (a plastic chair from outside will have to do right now because shower chairs are over $70).

Chris was able to make it up the stairs pretty easily, all things considered and after about an hour allowed me to lower his oxygen from 5 to 4 liters which is what the prescription is for. He's also got ten portable oxygen tanks, each will last between two and two and a half hours. We just let them know when we are down to two and they will come out and replace them in a day.

He loves his throne but has just gone back to his favorite black leather chair for a bit. It's good that he is a bit more mobile and knows that he will need to be able to walk into the oncologist on Friday.

Should not be too much longer

I set up the timer and clock for the medication reminder system, dropped Geoff and Trish off at the train station and am now waiting for the oxygen concentrators and the walker. I don't know where the supplier went yesterday to drop off the walker, but it was not to this house.

For those of you who are neighbors and friends who live nearby, the best time to visit is going to be 2-4PM or after 5. If you want to come by when I'm at work please give me a call at the office or on my cell phone so I can make sure that he's ready or at least aware that someone is coming in. I would ask that people please not call the house too often when I'm not there simply because without a voice it's very hard on him and he has a tendency of forgetting to breathe so I don't want him to panic if he is alone and can't catch his breath. We will have a list of people to call should he need some immediate company that we will put in place over the next few days and I'll know when the VNA is starting tomorrow morning.

A few more things ....

Like the company who was supposed to bring the walker that claims they missed us but clearly were not here... and then we need the two concentrators to be delivered and then lastly and most importantly we need to get him up the stairs. Chris had three very special visitors when we showed up at 6, some people who I had been unable to reach out to directly over the past few weeks to talk to, but yet had gotten the right information. He also had a few other visitors over the past few days (sometime he'll remember to tell me exactly who was there) every one of you have really helped boost his mood.

He was very calm when we were there, not in a tired way, but a "I know what I have to do". Yesterday he was insistent on a break of some duration, today when I told him the oncologists office called to see HIM he was like "okay". A few days of high protein shakes and some good food and he'll be ready to walk into her office. He is her last appointment and they are prepared to not only spend the time talking to him to make sure he understands but to also get him ready for the next steps. I have not heard yet if he talked to the psychologist that they said he would be meeting with, or maybe he just had a non religious epiphany of sorts, but I hope he's now ready.

Getting closer

We're putting everything together and hopefully things should be sorted and ready for Chris later today. I'm not sure why he told someone he wanted a commode when he really wants a shower chair... but maybe it can be used for that since it's essentially a raised seat that towers over a toilet seat.

I got a hold of his insurance case manager this morning to see if I can get them to approve two concentrators. They normally say one per house because they can accommodate up to 100 feet of tubing but the longer the tube the more potential loss along the way. To me it's also a bit of a safety hazard and a risk in general because the cats will almost certainly be interested in playing with it, as they are with anything new. I hope they won't freak over the noise the concentrator makes, it took them a week before they were used to the nebulizer and that was only after they saw that I didn't react to it.

I just got off the phone with the rep and they will be delivering two 10 liter units to the house. They said since he's currently on 5 liters they want to make sure if he has any episodes he will be able to increase it a bit. The second unit was approved for two months, which is what I had asked them for as it will allow us time to figure out what we will need to do and to plan. It will also give me enough room to shop around and see what makes the most sense.

There will also be a special "case manager" that Chris is eligible for from the insurance company who will work with the VNA (visiting nurse association) going forward to make sure that if there's anything he needs that he gets it.

These silly expensive diagnostic companies....

Must like bleeding away money because when I called to ask them why I did not see a charge for Chris's PET scan they told me it had already been paid by the insurance company. That's all well and good, but Aetna has no record of them submitting a bill for the PET scan. I then called them back, not because I really care about the 2-3,000 they are out, but because that means that the payment probably belongs to another account (I'm not banking on their being two people with the same name, same DOB who needs their wife in to hold their hands when they need to inject dyes) and now they are going to get someone all riled up and annoyed who does not need that.

I'm not sure they are used to people calling them up like that, but I have to stay on top of every charge that's submitted to Aetna and when I don't see one's I expect I have to question those too. It's hard enough reconciling the FSA side against the medical side, but it's a royal PITA because it's sorted by the date of service not the date received and when I download it to excel i have to go line by line to see what's new.

Monday Morning

No real changes to report, Chris was annoyed when I told him he could not come home and said that instead he would stay right where he was. Hopefully he finishes he radiation today (until he actually goes there's always a chance he could throw a temper tantrum and refuse). I suspect he will go though because the handicap placard application should be signed and ready for pickup and he does want that so that might be incentive enough.

Today is Trish's birthday (Happy Birthday!) and she will be going to NYC today to visit MOMA and then walk around a bit. Geoff might go on a half day fishing trip from the same place the ferry leaves from and then he will go see Chris at around 2. I'll go see him on my way home and then once Trish is back we'll go visit him again and then see what Trish wants to do for dinner. I'm sure they would be more than willing to go eat again at the Trattoria both tonight and tomorrow night, but like most restaurants in seaside communities, a lot of them are closed on Monday.

Unless I hear otherwise, Chris will be ready to come home on Wednesday.

Saturday Afternoon

Despite Chris's insistence that he would be ready and wanted to get out this afternoon when we came back to see him at two, he decided that he was too tired and resigned himself to getting more rest. A few of our friends really wanted to go see him today, but I would rather people come by the house once he's home than go see him now when he's moody, unshaven and generally in need of putting on some different clothing.

Geoff, Trish and I will walk down the hill and try to get into one of our favorite restaurants for an early dinner and then will walk back up the hill for the second time today.

I bought some Tervis Tumblers today, a magic bullet, a tray and a pitcher that will hold ice in a tube. That way I can give Chris a pitcher of water that will hopefully stay cold for a while when I'm not here.The tervis tumblers can hold his coffee (I'm working on getting him to try stevia instead of sugar) and the magic bullet will be handy for making his shakes, smoothies and soups. With the tray, he can have the stuff next to him but he will still need to swing his legs off of his throne to eat or drink.

We'll go over to see him tomorrow around 11 and see how he is. There is a better chance tomorrow that he'll want to get out but I'm still not going to put it at more than about 40% and I don't know that I want him to come into the house simply because if he gets winded coming up the stairs and can't catch his breath we would have to call the paramedics and I can't chance that kind of setback right now.

Late Friday

Monday will be the last radiation treatment. Chris has finally recognized and accepted that the radiation has kicked his *** so he spent the rest of the day after Kellie left sleeping (I made sure he had something to eat before he took his pills). Today was the first day I really saw him worn out, as opposed to the normal "I just want to sleep" attitude so when Geoff, Trish and I head over there tomorrow we will be ready for whatever he wants to do or not as the case may be. Chris suggested to me that now that he has a plan he is going to awaken tomorrow with all sorts of energy and focus and will be ready to leave the facility for a few hours. Reality says that it's more likely that he will need more rest, but whether he leaves the facility or not, food is at the top of the list!~

We got very lucky that his latest bloodwork came back really good. Other than a slightly elevated white blood cell count that can likely be attributed to the Decadron he's been on since he was admitted to the hospital, the rest of it is within range. That bodes well for the upcoming chemotherapy, but we still need to focus on getting him to eat and put on some weight. He's been told that if he is unable (and I am probably repeating myself but I'm too tired to pull the blog up on another tab and read through it) to walk into the oncologist's office that she is likely to say "thanks for coming in but we will not be able to treat you".

So we shall see what tomorrow brings. Please keep in mind that if you do have his cell phone number and do call him that because of his paralyzed left vocal chord that he has to exert more effort in order to make sure he is heard and that after a few minutes he is not taking in enough oxygen and he will get weak. I did ask the respiratory therapist if there was anything that could be done to help someone remember to breath out as much as they breath in when they talk and he said "if you can figure that out let me know" so in the interim I try to make sure that when I talk to Chris he does not have to give me more than a few word answer.

I've set the DVR to tape the Formula One qualifying and we'll save it so when Chris is ready to come home for a few hours he can watch it and the race (which is on Sunday). As of now he is one race behind but that's because he does not get to watch any sports channels so he does not know what's on when. He did know it was supposed to be on last weekend.

Will try to catch up tomorrow, as I tell his mother, please take no news as just that, no changes.

Thursday

The ambulance company was almost an hour late today so that reduced the time Chris was willing to donate to physical therapy so he only did an hour instead of two.

Since today was supposed to be blood draw day I got over there at four but by seven when they had not shown up we had to cancel. Chris needs his meds and he would not take them or eat until after the blood was drawn so we had to tell them not to bother. If they consider 3+ hours STAT then that's not a company I ever want to do business with! So now I'll have to go down there tomorrow when they call which will be before he goes for radiation. He has not had his blood tested all week and it's critical that they know where he is for this INR count. Whether I wanted to learn about that or not, I did because I had to explain to Chris exactly how it works and what it's used for.

The plan is to move him on Wednesday afternoon. The oncologist will not take him back into her care while he is in rehab, Chris will require a one week "break" before anything can be done, and we will be able to get the VNA in the house. By telling them today, I'm giving them enough notice to have everything arranged. Chris will need to come downstairs with me in the mornings before i leave for work and will not be allowed to go upstairs while I"m out. He will also have a walker, not because he is unable to walk, but because if he loses his balance there's nothing in the hall for him to hold onto (and it is not carpeted) and with the bones possibly being more brittle I don't want to take a chance that he falls. He is okay with it. He has possibly the worlds most comfortable chair to recline in so he will be content when I'm out and when he has to wait for people to come by.

I expect they will put the port in the following week. Since Chris is demanding a week sabbatical, we should be okay to do it a week from Wednesday with a goal of starting chemo on the next Monday.

Two more radiation treatments to go! No hair loss or headaches so far and just some minor fatigue. Now that he knows that's what is happening he's much more accommodating when I remind him of it.

All sorted...

I had a meeting with the facility yesterday and he will stay through the 7th. He did go to physical therapy and has promised to go every day for 2 hours. He goes from 11 to 12 and then 1 to 2. He has been told that if he does not participate he will not be given chemotherapy because nobody will treat someone who is that weak. He will need to walk into the oncologist's office when he has his next appointment which will probably be towards the end of next week or the beginning of the following week. Then he can have his port put in and get chemo started.

Wednesday Day 27

I think it might be more beneficial to get Chris home at the end of the week rather than leaving him over at the rehab place. He can get PT from the VNA and will also have a nurse come by to see him. I will meet with the staff at the facility today (something they should have done before now) to set up a plan with milestones. If he has not accomplished anything while he's in there he will be better off and more relaxed at home provided we can get him the type of therapy he needs. They really should have set up this meeting on Monday or at the latest yesterday. I should not have had to escalate it to the corporate office, but everyone who knows me knows that I escalate everything when necessary in order to get what I want. If Chris does not get through PT and more mobile they will NOT start him on chemo.

Dr. Sim met with Chris yesterday and told him that they felt he had been tolerating the radiation well. They also asked Chris for a list of his medications but when I asked the nurse for it, she told me that Chris would have given them a piece of paper with the request on it but when I asked him about it he said they did not give him a piece of paper. Naturally that means it did not get done but I just talked to his nurse and she will get it from the center.

It's very confusing in terms of which doctor he's under the care of because he's not a current patient of his oncologist because he's undergoing radiation and he won't be under the care of the radiology oncologist after he's finished with radiation on Monday. He will be under the oncologist's care once he goes back to see her, but I don't know when that will be yet. His new primary doctor he's only seen once so she cannot possibly know enough about him to be really effective.

To Be Expected..

After making sure that Chris would not be disturbed today by the nurses he was real animated when I got there and insisted he had been woken up multiple times. When I went to talk to Kristen about it she said that none of the nurses or aide's had been in so when she asked him who it was, it turned out to be someone from physical therapy. Despite telling me that he was going to go when he got back, for some reason he decided that because they were an hour late picking him up that threw off his schedule so he told them (or so he thought) that he was not going to go therapy that day. He did work with them on a schedule and a plan, but he did not communicate to him that he wanted to rest.

He also indicated to me that he was angry again that he was not getting enough sleep and when I asked him about it, he said that HE woke up at 3 and asked for a breathing treatment (but it was really 12). I told him flat out that he had NO bags under his eyes and looked far too well rested to have been sleep deprived so he needed to be aware that this is one of the side effects of the radiation and that it's fatigue not sleep deprivation. He accepted that and after a kind, gentle lecture from me about what he must do before he can come home, he said he would go to therapy the rest of the week. I let him know in no uncertain terms that if they feel he is uncooperative and is not making progress he could not stay there and until he can get up the stairs to the house he cannot come home.

The bottom line is that this is not completely unexpected and now that there are some things going on I will work on how it has to be addressed. When someone is stubborn it's not easy, but he's smart enough to reason with so we'll continue working on it as a compromise.

Midday Tuesday

So far so good today, he called me from the van on his way back. They were an hour late picking him up, probably as a result of the weather. He had a good night and told me he was ready to do physical therapy when he got back and would also eat. I got some milk so I'll make one of those double chocolate shakes when I get home to bring over to him.

I reached out to the VNA this morning as I need to get the process of getting him out of there going. I am annoyed that his social worker has not returned my call and has not spoken to either of us since he got there. If they are supposed to be his advocate they are failing miserably so the sooner I can involve the VNA, the better. They can also continue physical therapy with him and lots of other services that the insurance company will cover. It seems that outside of insurance in NJ other services are provided so we might be able to get visits every day during the week for up to four hours. I told Chris when he called me to ask to see Doreen since she's their representative who visits the facility every day.

I've also left a message for the director of clinical trials here to see if he has any information on some phase 3 trials that might be underway that Chris would qualify for. This is not for now, but would be something I would consider asking him to do if the initial treatments do not have the results we expect. At the very least he will have some contact information for me.

Monday Evening

Chris had a bad day. He's quite angry at the moment so after going out and getting him a double cheeseburger from Burger King I told him I was going home. He did not sleep very well last night and then despite all assurances that the phlebotomist would not go in and ask him for blood, she did anyway just as he was getting ready to go for radiation. Then when he came back, the third doctor came in (one he had not seen before) and could not adequately explain to Chris why it takes time to get the Cumaudin levels right so Chris said he fired him and now he has a different doctor. This new doctor is a co-worker of Dr Israel (who is actually not a psychiatrist but a palliative care internal medicine doctor) and even though she specializes more in geriatric, she felt that this doctor would be a great fit for Chris. I did speak to her and the only change she made was to start giving him zoloft to see if they can get the xanax use down a bit. Xanax is the best medication ever invented, in my humble opinion because no matter how hard you try, you can't get pissed off, even at the idiot on the highway who won't get out of your way.

Since Chris did not get much sleep last night, and was then aggravated by the phlebotomist, he told the PT person to come back tomorrow and then after he fell asleep someone came in and shook his leg and demanded to know if he had moved his bowels. He was like, you woke me up for that? I'm sure it then took him an hour to calm down and then when he went to sleep the same person came back, shook his leg and said "I have to weigh you" so that just set him off again. He says that he feels worse than he did in the hospital and that if they are going to continue to bother him he is going to walk out. I printed out all the manufacturer's information and statistics on Cumaudin in the hopes he would realize just why they need to keep testing his blood so I hope once he gets rest he'll be more accommodating. The next draw will be on Thursday at 4, so I'll leave work a little early so they can get it done. I also left explicit instructions that other than his meds he is not to be bothered by anyone. If someone goes to visit, they can look in the room, but if he's asleep they can't come in. I'll also talk to the social worker tomorrow and get things straightened out. It's possible that they can arrange to have the visiting nurse service provide therapy as well, so maybe we can see if he would be ready to come home this weekend. He promised he would do his therapy tomorrow, as he knows without it he will be unable to get the oxygen level down so I'm hoping that if he gets sleep that will improve his mood. You never want to wake up a Vickery (I'm sure someone in the family can vouch for this) or deal with them when they are really angry because then they are incorrigible so a nice rest is in order.

After almost 14 years of marriage I am used to his moods, so when I told him I was going home because he needed rest, he understood. Of course he wanted me to stay, but I said you need rest more than you need me to sit on the edge of your bed.

Since I seem to end the posts without offering anything about ME, here goes. I had a great first day back at work. I was a bit upset to hear that some of my co-workers from the original company I started with were laid off as part of this mega merger but obviously glad that most of us are in an area that has a demand that they are still short on so we are as safe as anyone can ever be in corporate America. Waiting to hear when Geoff and Trish are arriving, should be sometime later on Friday. It will be great for Chris to see his brother and sister in law.

Sunday afternoon

Thursday will be the start of the 4th week. Chris had a small breakfast but a really nice lunch. I got him some of the high protein double chocolate powder that I will mix with some milk and bring him later. I also picked up an ITouch for Chris as it has wireless internet and it's a lot smaller and cheaper than buying a laptop. I know he missed watching the Formula One, so if he can get over to comcast.net and log in we can probably find it on their fancast.

They will pick him up at 8:15 tomorrow for his 9:15 appointment. I'm sure once they realize that they only need 30 minutes to get to Long Branch they'll arrive a little later but the one thing about appointments in those types of places is they do NOT keep you waiting. The waiting comes after the appointment if you need to see the radiologist, or he needs to see you. Chris has a brilliant young Radiation Oncologist (Dr Sim) who also sees patients at the Basking Ridge location of Sloane Kettering. I expect in a few years he will be a leading doctor in his field.

I'm hanging out for a bit then will go drop his new toy off for him. He was going to see about trivia that they have at 2:15 but given that he's about 20 years younger than most of the patients and has hearing that's 200% better I'm not sure what kind of trivia it is going to be other than it being loud! I'll find out later.

Sunday Shopping

Even after ten years of living in a county where we can shop on Sunday it still seems funny to say that.... Bergen county is one of the few remaining areas that don't allow shopping on Sunday's, although I hear they want to change that.

I told Chris I'd get his oximeter for him and he will also need a few pairs of sweat pants, sneakers (i have no clue where his are because he rarely, if ever, wears them). I'm also contemplating getting him an IPOD nano that he can use when he wakes up in the middle of the night as a diversion from his breathing difficulties. It might also be a good way of getting him to measure how long it takes for him to feel better.

I'll go over there in a bit so that I can see how he's feeling and then sit with him when he eats breakfast. I believe at some point today we'll bring a beer or two over for him, I just have to ask the nurses what would be a good time to give it to him. I don't want him to have one just before/after his pills. Yes, the psychiatrist cleared it so that should bring a smile to his face.

I will need to speak to the doctor's tomorrow and find out what the plan is. It seems they just dropped him off and nobody was around to talk to about what we are after and about how long everything might take. I'd like to get him home at the end of the week because it looks like his brother and sister in law will arrive Friday night and it would be nice for them to get to spend a lot of time together. I'm also going to talk to the supply people I get the oximeter from because I don't know who will be the company supplying the oyxgen and Chris really wants a nice small unit that he will be able to take out with him.

Saturday

Chris had a good night (for him) and his coughing is more productive. He's now realized that drinking a lot of water does help with the congestion, so that should give him some more relief. He has been successfully weaned off his pulse oximeter and is handling the lower oxygen without any problem. He does want the oximeter, but he'll need to wait until tomorrow, I'm not going to do much today other than go back to visit him around lunch time.

He did have some breakfast and has decided that he will eat several small meals a day so once we get through today he'll start getting down to the dining room for lunch and dinner or they will bring the food to him when I'm not there. He liked whatever it was they gave him for breakfast (I think it was some kind of fritatta) so that's a good start. As is the case with cancer patients he has lost a fair bit of weight but has recognized it and is determined to put weight on before chemo starts. He will get all the butter he wants... and then he can drink beer as that's a good source of calories. At this point it's more about the calories and avoiding some of the big Vitamin K veggies than anything else. I'm working on getting him to drink his coffee with less sugar.

He should be having his Physical therapy about now and the goal is to get him so he can get up and down the stairs by himself and also so that he can manage on his own. Now that he is comfortable with the oxygen and has taught himself how to relax and breathe we will probably be good with having the visiting nurses come by to check on him as well as setting up a buddy system so he knows which neighbor is home and how to reach them if there's a problem.

The oncologist mentioned that they did not put the original biopsy sample into the solution so once Chris starts chemo they will try to get another sample that can then be sent to Response Genetics.

Off for a much needed shower!

Long, long day (but not all bad)

The phone rang at 4:45 so that's when my day started. Now, at 7:45 it's winding down and I can relax until I have to go see him at his new place at 7 where they need to draw blood and check his IMR levels again before he can be given more coumadin. I suspect it's going to take a bit of time to get that number where they want it. The facility does not have any people on staff to draw blood so they have an outside company come in early in the morning. He should be okay during the week because the psychiatrist will meet him down in radiology so if they need it she will be there. She's the perfect person to fill in for me and he trusts her.

Naturally, after calling me in a panic and asking me to come down as soon as I can he was sound asleep when I arrived. It took until 2 this afternoon to get the authorization to transport him and then we had to wait until 5:30 before they were able to pick him up so it was after 6:15 before he was there and settled in. He seems very pleased with the place and made the decision that he will not stare at the pulse oximeter but he still wants one around to check his levels. I'll go get him one tomorrow that he can put on his finger when he feels like he has to check his oxygen levels. He's successfully transitioned from 6 liters of oxygen down to 5 and wants to go to 4. He asked when breakfast was going to be and told the nurse that one of the things he has to do this week is to put on weight.

That being said, I'm off to check email and relax. Nice ending to the day! Chris is in good spirits and is starting to take control back which is great.

Waiting on the Duc's throne to arrive.....

Then I'll go back down to the hospital where he is eagerly awaiting (not) his B12 shot. B12 and Folic Acid are required when Alimta is given as part of the chemo. The B12 shot is good for a month so no reason to wait when it can be ordered while he is there. The Folic Acid can start when we get closer to the treatment. Everyone showed up at one time this morning so I need to speak to the nutritionist about his coumadin and what he can/can't have and then the case manager about his moving to rehab when I go back down there. As far as I know it will happen after 12:30 tomorrow which is when the psychiatrist has arranged to borrow the machine that can be used to get his blood level instead of them doing a blood draw. They will also arrange to come down to radiology next week when he's in for his treatment if there's a need to keep checking his levels.

We'll need to work real hard on getting Chris moving up and about as soon as we can. He does have limited lung capacity right now so the key is to find the perfect level to allow him to gain strength but not too much that he gets too tired. I'll also stop somewhere on the way to the hospital and bring him something to eat. One of our friends was going up to see him when I left so hopefully that also lifted his spirits. Once he's down the street he should have visitors every day and I can go see him on my way home from work.

Wednesday

First I have to mention the unique and creative floral arrangement that was delivered to Chris today. Knowing what a great sense of humor he has, they decided to send him an arrangement that has two parts to it. The carnations are all around both parts and the top has petals on each one and then a hershey's chocolate kiss on it. Yes, he got a floral arrangement made out to look like a pair of boobs. That's definitely a first for the hospital and it sure made Chris smile. Our friends at the floral shop will probably put a picture on their web site because it's so unique that I fail to see how it can't make a recipient smile.

It looks like they are planning on moving Chris to a rehab facility at the end of the week. I don't know if that's tomorrow, Friday or Saturday so I will have to ask them in the morning what they are looking at. The place is right down the street from us which is good because he can have everyone he knows in town stop by to see him and he can also come out for a few hours at a time. They will also take him to his radiation appointments which is good and that will free up some of my time so I can go to work next week. I'll find out soon about when he'll come home, but a lot will depend upon getting things sorted in the house and arranging for the oxygen and other stuff. Chris will not go anywhere without his oxygen monitor so we will have to see about renting or buying one that can be taken out with us.

Radiation went well again today and Chris is going to ask them to take a picture of him in his mask because he says it's like a Silence of the Lambs one and he seems to be taking all that in stride.

Chris's oncologist said that because of the clots they will not be able to use Avastin as part of the treatment so it will be carboplatin (I'll have to find out the spelling) and then either Alimta or Taxol along with the zometa. She said she had no preference whether the second one was Alimta or Taxol so now I will go read up on the successes of using one over the other. I think when it comes to secondary chemo drugs there seem to be very little differences in them. She told Chris that the chemo is going to be tough and he seems ready for it. The only thing that's stressed him to date are blood draws....

Next update I should know when he's being moved.

Tuesday Night

Radiation appointment/treatment went well and Chris did have some of his ensure and water after he came back. No changes overall, still on the oxygen and that will not change until the clots dissolve. I did not ask why they opted not to treat the clots but would have to speculate that the less medication he's given right now the better.

I will go down there around 8 and then after his radiation appointment I will go home and spend the afternoon working. I'm hoping over the next few days we will have a few friends go and visit him which will help him pass the time. I'm guessing that the oncologists and other doctor's are not used to dealing with people who do their homework ahead of time but it seems to me based on the question I asked the radiology oncologist that this is the treatment they are using. http://www.mmccancer.com/mmc_radonc/treatment/imrt.html

He mentioned that there are multiple tiny lesions in the brain and that treating it will all over brain radiation will allow them to destroy anything that was too tiny to be picked up by the MRI.


It will be 10 treatments and then he will be able to start chemo. While he is on the blood thinners (well he is not on any because the drugs were too effective - not a bad thing) or has thinner blood they won't be able to put in the chemo port so we will see what they want to do. If the chemo can shrink the tumors the way the doctor's think it will, they might be able to look to use some of the newer radiation (TomoTherapy) on him which would zap any of the tumors that remain.

Will cross my fingers that Chris continues to feel no effects from the radiation but sometimes they can take a while to kick in. I was amazed at how many elderly people were walking around in the radiology department and were accompanied by their spouses who seemed to be far more sick than they appeared to be. I told Chris those are the people who are the true inspiration, that despite their ages, they are determined to get through things and to continue getting on with life.

I can use Chris's new phone to access this site, but I'm unable right now to get the comment/update button to work.

Oh, for those that were asking about the medication Chris was given for the pulmonary embolisms, it's LOVENOX. It's specific for DVT and he is delighted and thrilled that he no longer has to be stabbed in the stomach to receive it.

Off to bed!

On the fly post

I'll ask someone in the family to add a comment here and fill everyone in. Chris has had another rough night with anxiety, this time he waited until 7 to call me versus the 3:45 from yesterday so I'm on my way to see him as soon as I put the garbage out.

He has been moved, the blood thinners are working, they don't anticipate new one's forming. He will start radiation today and he is in a room now where he can get calls and receive visitors.

Sunday afternoon

There is no update except that Chris was in great spirits when I was there and seems to be learning about how to do deep breathing when he starts to feel anxious. They are offering him xanax too which helps him immensely. He was very appreciative of Kellie's visit yesterday and enjoyed his time with her. He also spoke to his mother and brother today and I think they could probably sense he was more upbeat (or at least as upbeat as someone in his condition can be). It's still kind of hard on him to maintain his oxygen intake when he talks but as I said, he's learning to relax when he's done with the conversations so it's not taking long for him to stabilize.

I will call the ICU in the morning to find out what time they've scheduled Chris to see the radiologist so then I can plan my day. Tuesday his throne will be delivered so I'll need to go see Chris in the morning and then come home for the delivery.

Sunday Morning

I'm unsure how long they will be keeping Chris in the hospital. I should be able to talk to the radiation oncologist tomorrow to find out the schedule for radiation (it will be every day for three weeks) and whether they anticipate moving him out of ICU and into another room over in the cancer center or not.

In a nutshell, Chris had a panic attack on Thursday that resulted in him being unable to catch his breath. When someone takes pain medication one of the 'side effects' can be an impact on the breathing, so add that in and it made for even more anxiety. His saturation levels had been in the 90's when he left the hospital at the beginning of March, but since he's been on the pain medication for a while, this reduction may have been gradual. Now, the clots in the lungs can also add a strain to the heart which could then also reduce the breathing a bit so what we had was sort of a "perfect storm" brewing and luckily we got to the hospital before the clots that we did not know about moved around and cause something we won't talk about to happen. The doctor said yesterday the overall condition of his lungs is good and that is one reason why the clots stopped there. These clots can originate in the legs, but if the lungs are in good shape, as his is, they are usually stopped before they head too far north.

I will be setting up a spreadsheet as soon as I'm done that I will give to Chris when I go down to the hospital. That way they can let him know about things that they plan on doing on certain days. He still continues to have panic attacks, but now they are giving him xanax the wonder drug so he should be able to stay calm when they come in and out. They bring all the equipment to his room, but nobody seems to tell him they are going to show up so it's overwhelming. The spreadsheets will also help us plan so that when he's out of the hospital we can keep him on the same schedule.

The doctor put him on Decadron the other day which is a steroidal anti inflammatory that will help prevent any swelling that might occur as a result of the radiation. From what I read, it seems sometimes they prescribe it after they know how people react, but they want to make sure that once they start the treatment they can get rid of the METS. As an FYI, there were no METS on his brain on 12/31 so that should give you some idea how aggressive the cancer is. A significant number of people with lung cancer do get the metastases there, so he's not experiencing anything that they have not seen over and over again. And even though there's going to be a delay in starting chemo, it's only two weeks as he was not going to start it until 3/30. I will verify the method they will use but it appears from Chris's explanation about how it works that it's the newest technology and all the leading hospitals have it.

I think that's about it right now. Kellie came to visit yesterday and I know that made Chris happy. His new "throne" will be arriving on Tuesday so when he comes home he'll have something to sit/recline and sleep on if he needs to.

I will be home later this afternoon and will start getting things ready for the furniture's arrival on Tuesday.