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.