Happy Boxing Day

I thought I would give you all an update on the children.  I've mostly write about my experiences and my perspective without really mentioning the kids. So here is a quick update on the kids.

Isla had a Frozen christmas, everything was Frozen, from crayons to sheets.  She also got a Word girl costume that she is obsessed with and wouldn't take it off yesterday. But there was on thing Santa forgot and that was binoculars.  She wanted ones just like Daddy's.  We use them to watch for birds in the backyard. We also took them to Hawaii when we were out there two years.  She had been asking for them for awhile and honestly I don't know why I didn't buy them.  But the nice thing about a January birthday is I can right the wrongs on Christmas. I've already been on Amazon to find a pair of kid friendly binoculars.

She's handling this all very well, she speaks of Andrew often.  All happy memories, I hope they never fade.

I was just interrupted by Isla because she is scared to be alone at the moment. This happened last night too. Grandad just came upstairs and I convinced him to read another story.

Graeme is wonderful, he's sitting up on his own.  This is a recent development, just last week he was unable to steady himself. I think he's quite proud of himself.  He's also cut two bottom teeth. Ouch.  He getting bigger and is starting to show movements that would suggest crawling. (Isla never bothered to crawl, she just got up and walked.) We will see if he follows in her foot steps or not.
He's still not sleeping more than 4 hours a night. It's pretty painful, but once the house is quiet and he is in his own room we will try to start sleep training. Fingers crossed.

Graeme absolutely adores Isla. He lights up the moment she walks in the room. She too loves to love on him so much that she shares her germs with him too.  (She was the Typhoid Mary) I guess with the second child this is unavoidable.

Yesterday was extremely difficult.  The day seemed to drag on and had no real holiday feel.  I miss him more and more everyday.

I picked the short straw.

I don't know what to write, I fear that I may be depressing.  After all it is the holidays and I should be joyful. But  for me (and so many others) they will never be the same again. I read a quote today on grieving and  it said, "Holidays, anniversaries, and birthdays will be hard forever. They are forever tarnished in my mind and heart, but I put on a facade for the kids. I want to provide that idyllic idea of Christmas.  Where everything is warm and fuzzy and shield them from the sorrow.  My mother hated the holidays, I never understood why, I just thought she was a grinch.  But now I understand, why they are so difficult for so many people who have lost a loved one.

One year ago to the day, Andrew and I were in the Emergency room at Winchester hospital.  He was brought in the ER for severe stomach pains and waited in the hallway to be seen by a nurse.  They did a CT scan to see if it was an appendicitis.  We waiting for hours in the hallway for the results.  I remember being so annoyed and frustrated that they would not give us a room even after I begged for hours. Andrew was in so much pain it was difficult to watch, and  I was pregnant and paranoid about getting sick from the other patients. It was the height of cold season and I am a bit of a germaphob.
After waiting for forever they had the results, and finally wheeled us into a room.  I was thankful, I thought they finally listened or cared about the pregnant lady and the sick man. But little did I know it was because they had to deliver the gut wrenching news of Andrews cancer. I can remember that day so vividly, like it happened yesterday.

I know I've said it so many times, but it still doesn't feel real that he's gone.

It's been an awful week.  It started out in the doctor's office getting a cough examined.  Isla had been hacking up a lung the day before and I wanted to make sure it was just a cough. It was a nasty head cold that is still lingering. She is on the mend, but keeps a box of tissues with her. :( And of course Graeme had the same cough, but his is about a day behind Isla's.  So I've had several sleepless nights this week. It's so difficult to function without sleep.

This is when I know he's really gone.  In the middle of the night when I am tending to Graeme and there is no one else to listen to me complain.  Or share in the experience, it's just me.  I can't say that Andrew would've been extremely helpful at 2am but just knowing someone else was there.  Someone who had my back. That's when the pain is real, that when my heart hurts.

So it's been an especially painful week, the kids being sick and the reality of Andrew's death is slowly sinking in.

Thanks for reading.
Karla

Widow at 40.

I never expected to be a widow at 40.  I don't really even know what it means to be a widow.What does a modern widow look like? The only think I can picture is a woman from the 1900's and is always dressed in black. For one I always wear black or a dark color.  People would say it's because I'm from the North East. Or at least that's what people told me when I lived in San Diego.  Okay so the black clothing thing is out. But what else does it mean?  Lack of a wedding ring? I still wear my wedding rings, I still feel married.

This past weekend was so bittersweet. The ceremony was amazing, the speeches were so beautiful. And I was able to see and connect with so many loved ones it was amazing. It was also busy, and distracting.  There were dinners, lunches and visits from friends, no time to think of anything.

The last of the lot left yesterday evening and now the house is really quiet. I've been sitting with the sadness more since Sunday. It washes over me more often, and I find myself wanting to connect with Andrew all the time.

 Isla came into our room this morning and said there was a strong smell. I thought this was odd, but my mother too commented on this smell several mornings. I thought it was bizarre I couldn't smell anything, and I have a hyper sensitive nose.  I want to believe this is Andrew present in the room. It only happens in the morning, so I fantasize that he is sleeping with me at night and leaves in the morning. I am looking for anything that makes me feel closer to him.

 Graeme too was laying on the bed and started to giggle while I was out of the room.  I could hear him and thought it was Isla making him laugh.  But she wasn't in the room, no one was in the room. I'd like to think it was Andrew who was making Graeme laugh.

I have heard that as time goes on I will find myself "feeling" Andrew in unsuspecting ways. But I want to feel it now. I want to know that he is with me and watching the kids grow, or listening to Isla ask where do babies come from?  (yes that was asked this weekend)  I think this is the beginning of my grieving.  I haven't been able to grieve, or even sit with the sadness until now. Even now I have to be careful not to show too much sadness in front of Isla.  She is very concerned, and has her own set of questions. (She asked if we could drive to heaven). So I push it down until I can sit in front of this lap top and begin writing.

I booked the trip to Vegas and Denver.  It will be the first trip without him. I know he would want me to go.

I guess the journey of what it means to be a widow will come more apparent as time continues. I am sure I will revisit this thought over and over.

Thanks for reading, and dealing with grammar mistakes.
K

This picture makes me laugh, Graeme never smiles in pictures!


Andrews death hits me when I am the most quiet.

Almost been a year since my last haircut. I finally pulled the trigger and arranged for my mom to sit with Graeme while I got a new do. It was a new place, a new girl and new conversations. It was early and honestly I didn't want to make small talk.  I liked the quiet. But of course she apologized for not talking more and asked my plans were for the weekend.  My stomach sank, it felt like someone had just punched me in the gut.  I've been so busy this week trying to get an outfit, deal with paperwork and arrange dinner and house stuff to even think about it.  But in the quietness of that question I thought about it and I felt it.

Not sure what to think or to expect from the weekend. I studied Buddhism in college and one teaching from the Buddha is to live without expectations. It's a very difficult to live this way, we all have expectations about everything. I can safely say that this is a first and  I have no clue what to expect from this weekend.

One expectation that shocked me was planning a trip to Vegas. A good friend from college wants to meet sometime this spring to play with the kids and warm up. I told her I would research the flights and get back to her.  When I started to check on flights my stomach sunk and I became anxious. I did not expect that at all. Many of you know me to hop on a plane at any given time to fly anywhere in the world without question. This was a new and  bizarre feeling, I did not like one bit. I haven't ruled out the trip, I would like to see her and of course defrost from the Massachusetts winter. Andrew and I always said we would travel with kids, and I'd like to keep traveling. It just seems really lonely the idea of flying without him.

I look forward to seeing everyone this weekend.  For those of who are traveling, god speed.
Thanks for reading through my bad grammar. :)
Karla

2 weeks....

It's been a bizarre two weeks. Many emotions swirling inside and out, of my being. I really havent begun the true grieving process yet, too many distractions, or at least that's what my therapist says.  She said it would feel like Andrew was on a business trip for awhile until THAT while was too long.  Then I would begin to feel the deep sorrow and pain of the loss. She is way more experience with this kind of thing so I take her word for it and go about my days. But she's right so far, it just feels like one long business trip. I still feel like he's going to walk through the door any day now.  It doesn't seem final, not yet.

Andrew's oncologist sent me a letter today expressing his deepest condolences. He had also called me the day he passed to extend his condolences. I always liked to think that he enjoyed treating us because we were young not like the rest of his patience. Anyway in his letter he said that Andrew approached his illness with courage and dignity and that he it was a privileged to have know Andrew. The letter made me cry, as do most cards that arrive in mail. But it brought me back to the days we spent in the clinic, treatment after treatment hoping that this was just a chronic disease.  Something that he would live with for many years to come. We both begged for 10 years, that we could deal with this for 10 years. We got just under a year.

I'm crying as I write this, I don't get the chance to morn him durning the day.  The kids distract me from any kind of sadness.  Isla makes me laugh constantly, she is truly my best friend.  I love to hear her talk and see the world through her eyes.  She doesn't understand the finality of Andrew's death (neither do I) and asked to call him the other day. She said she missed him.  We were driving so I didn't have the ability to "lose it" so I had to explain that phones can't call heaven. But that we can talk to him without a phone and he will hear us. I don't think that made sense to her 3 3/4 years old mind, I didn't know what else to say.

The memorial is soon, and I look forward to all the familiar faces that will be gathered. It makes me so sad that we just had a gathering like this 5 years ago in St. Lucia. It does't feel right or fair to be doing this so soon after the wedding.

I am so thankful for all the love and support people have showed me thus far.  The sympathy cards continue to pour in and when I woke yesterday my driveway was shoveled. Human beings are wonderful creatures.

Celebration details.

It's almost a week since Andrew passed.  My heart is heavy.

I laid in bed last night listening to Isla giggle in her sleep.  It makes me smile and wish I knew what made her giggle. Her little mind amazes me, (yes I am biased) but she thinks and remembers so much. She will bring up random memories from past trips, memories I forgot about.

 I see so much of Andrew in her. She asked me earlier that day when we would be taking another plane ride.  I know she is getting antsy, like her Daddy to take a trip. I told her I didn't know, but it made my stomach turn.  This would be a conversation Andrew and I would have and discuss some crazy plan to spend the week in St. Croix or someplace exotic where no one else went.  Somewhere off the beaten path. But now the burden is all mine, and I think what would Andrew want to do? 

Before he passed we had a long discussion about how we really balance each other, and how I would miss this so much. And I was nervous about flying off the handle.  He told me when I am spinning emotionally to think to myself and say, "What would Andrew do?"  I chuckled, it broke the sadness. But I now find myself thinking this over and over and over each day. Especially when planning his life celebration. 

Here are the details of the event.  It takes place at the Marriott located in Patriots Place, very fitting for a sports fan.  

 Below you will find the reservation links your guests can use to make online reservations.  Please remember to remind them that parking is complimentary Self or Valet depending on what is going on at Patriot Place and although the Website indicates that Parking may have a $50 fee, All of your guests will Not be responsible for such charge.   

If you have questions or need help with the links, please do not hesitate to ask. We appreciate your business and look forward to a successful event.  At this time, your guests may call 508-543-5500 and reference theCelebration of Andrew Cuthill’s Life Room Block to make their reservations at the group rate of $159.   The attendees may also book directly online by using the link below:

**Please note that if your guests are looking to book their reservations online, if they attempt to make their reservation to check in prior to 12/4/14 or if they choose to stay beyond 12/7/14 the system will respond that there are no rooms available, so if they make you aware of it, please let me know and I can see if we can get them into the hotel with their desired check in /check out dates.

Celebration Of Andrew Cuthill's Life

Start date: 12/4/14

End date: 12/7/14

Last day to book by: 11/24/14

Marriott hotel(s) offering your special group rate:

·  Renaissance Boston Patriot Place Hotel  for 159 USD  per night

Book your group rate: Celebration Of Andrew Cuthill's Life >>

Just a reminder, the cutoff date for your block is  11/24/14 Please advise your guests to make their reservations prior to this date.

Renaissance Boston Patriot Place Hotel for $159.00-USD  per night

We've finally come to a decision on Andrew's memorial.  It will be held at the Renaissance Marriott at Patriot's place in Foxboro from 2-4pm on December 6th.  We've held about 30 rooms for out of town guests at a reduced rate, just mention Cuthill memorial.  Here is the link to the hotel.

http://www.marriott.com/hotels/travel/bospp-renaissance-boston-patriot-place-hotel/

I would a quick RSVP to get an idea of how many people are coming. Also if you have any question or concerns, you can email me. Also if you are posting pictures of Andrew on Facebook, could you tag me or Jamie in the pics? That would be helpful, there are so many beautiful pictures out there we'd love to see.
Karlacuthill@gmail.com

Thanks,
Karla

Transition

It's been two days since Andrew passed. I'm not really sure how I feel at the moment.  I have a  sense of relief, he was in a tremendous amount of pain towards the end.  Even before the end, he suffered under chemo, and the side effects.  The treatments were difficult on so many levels, nothing about his  cancer was easy. He fought, so hard though all the ups and downs he never wanted to give up. Even at the end he fought the whole time. In his final moments you could see his frustration, and desire to stay. But it still doesn't feel real, as if he's on a business trip and will be home soon. I'm not sure it will ever feel real.

He was surrounded by all his family, he was at home.  I refused to have him at the hospital, it seemed so impersonal. And with all he went through I felt he could at least have his bed and the comfort of home. 

 Hospice was great, could not have done it without them.

I've been overwhelmed with support and love from so many people. Thank you to those of you who have reached out, emailed, texted and called.  It means so much to know he meant so much to so many.
Karla

Requests from friends.

Karla here, I hacked into Andrew's blog.  I didn't think I could figure it out, but I did and proud of myself.
Many of you already know, that Andrew's health has taken a turn for the worse. He was recently in the hospital due to severe abdominal pain and given heavy narcotics to ease the pain.  The oncologist informed us this would happen and isn't a good sign of things to come. The "last chance" chemo really took a toll on his health, and he is unable to continue with treatment. His body fought very hard to beat the cancer, but the science has yet to figure it out. We now have a Hospice team in place to support us through this difficult journey. The goal is to keep him comfortable and pain free.  I'm not going to go into details about the situation, that is not the reason for my post. I will explain, the reason for my hacking.

One of the many devastating aspects of this  awful situation is Isla and Graeme will not really know Andrew.  This is where I need your help. Many of you have shared wonderful times and memories with him.  If you could write a letter, or 10 ( you know who you are) to Isla and Graeme telling them of your wonderful memories. Even postcards Andrew sent you would be greatly appriciated. I will take these letters and make the kids books. They will learn about their father through all of you.  Pictures would be great as well.  You can either email them to me or snail mail. 
My email is  Karlacuthill@gmail.com
You can email me for our home address.

Now that I know I can hack his blog, I will post updates.  I'm not a huge writer so they will be brief. 
Thanks for reading,
Karla

Scottish Independence and Remembering Quebec Independence

September 15

Hey everyone.  With my cousin Katie being here this past weekend (she's from Glasgow but lives in Oxford now), it kind of brought to light that there are big things brewing in Scotland. A national referendum is scheduled to be held this Thursday, September 18, where voters will be asked to answer Yes or No to the question: "Should Scotland be an independent country?"

Why do I care?  Well, my son's name is Graeme MacLellan Cuthill so that should be a clue that Scotland is important to me.  My Dad was born in Glasgow and moved to England in his early twenties, and I have a number of relatives that still live there.

September 16

Scotland became part of Great Britain (England, Scotland and Wales) 307 years ago, and are now part of the larger United Kingdom of Great Britain and Northern Ireland, as well as part of the European Community and the share the UK Pound with the rest of the country (although strangely, three of their banks print their own banknotes, so there are Scottish pounds floating around but they are pretty much the same as the Bank of England pound notes).  Don't try to use them in England as they are not looked upon too favorably down there.



Note that I will use Britain and UK interchangeably throughout out this blog.

The vote is scheduled on September 18 (Thursday) and only those actually living in Scotland on that date can vote.  So my cousin Katie, because she lives in Oxford, cannot vote, nor can my Dad as he lives in Canada. But a 16-year old living in Scotland is eligible - go figure.

Why do the Scots want to separate?  Well the Scottish National Party, which had pledged to hold a referendum on independence now holds a majority in the Scottish parliament and have taken the opportunity to move the issue forward.  Additionally, and for those of you closer to the "action", so to speak, please excuse any errors in my understanding, the issues that are driving separation are some of the following:

• All nuclear weapons would be removed from Scotland (including a very large submarine base)
• Scotland would be able to pursue a more left wing political agenda, as they have had significant issues with David Cameron's right wing UK government
• Scotland feels it is better able to take control of revenues from North Sea oil and gas found in Scottish waters
• The devolved Scottish parliament that the UK created back in 1997 to sate some of the Scottish needs like education, social services and home affairs instead stoked the fires of nationalists and created what some have called the "Braveheart" generation

September 17

So if they do separate, what happens next:

• For the most part it is unclear.  The actual separation won't happen until March of 2016, a date set by the British government to finalize separation.  Britain doesn't actually have a constitution so it is not written anywhere how a separation should take place so it will take time.
• The Cameron government has stated that there is no turning back.  If the vote is to separate, the process will take place and Scotland won't be able to rejoin Britain if things don't work out.
• Scotland will no longer be part of the EC and will have to re-apply.  It sounds academic but Spain will definitely not be in their corner as this will give lift to Catalonia's desire to separate from Spain (a region that includes Barcelona).  It might drive Quebec independence in Canada too, something upon which I give some thoughts further below.  One thing to note is that the UK government is seriously considering leaving the EU itself.  That's another story.
• The Scotland currency being tied to the UK pound and therefore the UK Central bank.  There is no guarantee Britain will allow that to occur. 
• Many other things will need to be discussed but these are key.

September 18

It's voting day.  Not sure if we will now the results until tomorrow.

I indicated above that I also wanted to compare this to Quebec independence, and their last vote back on October 30, 1995. I won't go into as much details as to the why's or why not's as above but will try and quickly summarize:

• The Parti Quebecois (a separatist party) gained power in Quebec and promised a vote
• A previous vote had failed in 1992
• Quebec had always been part of Canada since it's the country's creation in 1867 (when it no longer was just a British colony)
• It did actually get violent at an earlier point around the early 70's when a terrorist part called the Quebec Liberation Front (the FLQ) commited some terrorist acts around the province including the kidnapping of the UK Trade Commisioner and the murder of Quebec Labor Minister Pierre Laporte.
• From a personal standpoint, we emigrated from Britain to Canada at this point (yeah...great timing - my parent's are of the adventurous type).  I don't remember much personally (I was only 4 at the time) but my parents remember the Army being on site at the airport when we landed.

In any case, I had just moved to the United States in September of 1995 to work on a project in Topeka, Kansas with my company at the time, AMS. A number of Canadians moved down with me (I seem to remember 9 in total, most of with whom I close friends right up until this day).  The reason for so many Canadians going to Kansas was that the project was going to be run by the head of AMS Canada at the time, Colin Shaw, who was a dual Canadian-Brit like me.  The project in Kansas was as big as if not bigger than all of AMS Canada operations.

So once down there, Colin decides to hold a get-together at his house for Referendum night.  It was supposed to be a night of fun (he had a huge house in Lawrence, the town where most of us lived about 30 miles from Topeka, where we worked) with eating, drinking, many rounds of snooker on his giant snooker table, as well as a big screen showing the results as they came in (he could access some Canadian stations through his disk).  The way the question was worded, a "Yes" vote meant the Quebce citizen wanted to remain in Canada.  "No"  not so much.  Because the polls were showing solid support for the "NO" vote, it was supposed to be a night of celebration as our home country remained a unified whole. 

A "YES"vote would have brought trouble.  The many non French speakers in Quebec, mainly English and Native Americans tended to live in solid pockets of the province where English was the main language, including several large pockets of downtown and West Montreal, and who would demand their right to separate from Quebec. It might have gotten nasty.

So I definitely took part in the festivities for a while, but as the evening wore on, I felt myself being drawn closer to the TV as margin shrunk gradually from a "solid" 55%-45% yes-no to barely 51%-49%.  Many of the other Canadians, and some of the Americans when they saw how serious it was getting, became glued to the big screen, it was just plain scary.  The party continued to be a a celbration of sorts - C'mon free drinks!!  However, we went home to our separate apartments that night wondering if the country we were born, or like me, raised would cease to exist, at least as we knew it.  I wonder how Casey, Raghu, Trevor and Ronnie Max remember that night - I should ask them.

When the votes were finally tabulated, it turned out to be 50.58% NO and 49.42% YES.  It was that close, but in the end, 2,362,348 voted NO and 2,308,360 voted YES.  What a sense of relief.  Support for separatism has come and gone since then and there is always the chance of another referendum if English Canada does something to offend or take away the rights, either real or perceived, by the Quebecois (how the French Canadians of Quebec are known, rather than Francophones which include French Speakers across the country, but mainly focused in Ontario and New Brunswick).

So my little story around separation. I await the results from Scotland.  I don't want to see them separate myself, but I have no say in the matter...

Fifth, Sixth and Seventh Chemo (Second Regimen)

September 14

So I did make mention of some of my experiences with the Second Regimen of chemo in the blog labeled "The Move" earlier this month.  But I really haven't gone through any details since then and have not provided updates, for which I apologize, seem to be doing a lot of that lately.

In any case, one thing that is really interesting is that for the most part, each of these chemo sessions has kind of played out in a similar way (which, even with some of the negative issues I'll describe, is a really good thing - essentially...no surprises).

So the three sessions were on August 5th, August 19th and September 3rd.  Generally, here is how they go...

Pre- Chemo Session - I am a grouch. Because Day One has been somewhat stressful, I do get a bit cantankerous, but I am challenging myself to be better this week, when the 8th session occurs on Wednesday, September 17.

Day One - onsite at Dana Farber.  Generally, Karla, Graeme and I go in sometime around 7:30 in the morning and wait a half hour or so before I get blood drawn.  They then leave the needle in my cathport, where it will stay for the next three days.  At this point, I am going to ask for your help.  On only one day in all the chemo sessions I have done have I remembered to shave the hair in my chest area.  This makes for Friday, when Karla removes the needle, which is firmly bandaged to my skin, a very painful day.  If someone can just text me this Tuesday night and say "Kelly Clarkson", it would be much appreciated.

Thank you in advance for your help.  The worst thing that happens on Day One are the cold sweats which I have described to you in the past.  They start as I am given the last round of chemo at the hospital.  Heather, who has generally been my nurse throughout this process, gives me some medication that controls it for the most part while on site.  Unfortunately, by the time we get to the car in the parking garage, I am dripping and it does not matter what temperature is outside.

What Karla has done is take the rocking chair and ottoman that she uses to feed Graeme in the middle of the night, and cover it with towels.  I wear a bathrobe to keep me warm and essentially watch HGTV until I fall asleep.  My brain is incredibly loopy after the initial sessions but returns to normal (for the most part over Day 2 and Day 3).  The problem I am finding is that sweats come on the strongest when I am asleep, so I wake up in the middle of the night just drenched and try and do a changeover, and hopefully don't bother Karla and Graeme.

I just hate Day One and the way it makes me feel, but after seven sessions, it looks like this is basically what I can expect until I switch to a different regimen.

Day 2 and 3 are spent at home hooked up to the infuser.  I seem to be doing much better on those days than in the past on Regimen 1.  So I do get some work done when I can.  On Friday, Karla unhooks the chemo infuser, and then hooks up a different infuser with a saline solution that gets delivered to us.  I am on this for an additional four hours, and then, finally, I get completely unhooked (we actually have mini-medical waste box where we can drop the needle).  And then...shower...Yes!!!!  I feel like myself again.

Day 4, 5 and 6 are generally good days.  I have to remember to pace myself sometimes, and take my medication at the appropriate times (generally I'm good in the morning and at night but sometimes I get so deep into a work issue that I don't take my mid-day meds at the right time, and it can really bring on the fatigue).

An aside here, I have been having some issues with my teeth and I'm not sure if it is chemo-related or just 48 years old related.  Last year, I had all of my wisdom teeth yanked (one of them had an abscess and the dentist felt it was better to just remove them all).  A few years ago,  I also had a crown put on one of my back teeth by what can only be described as a "quack" in Montpelier VT.  His equipment was old, the toupee that he had on his head needed constant adjusting ("Nurse, more suction, and can you move things down my forehead a half inch" - a little liberty with the truth to keep you entertained, although not with the toupee itself), and I never felt comfortable with the crown he put on (I changed dentists after that session). 

It seems my teeth have moved a bit because flossing has become an incredible chore.  I also feel some pain in a couple of areas that affects my eating (although things have improved big time in the last few days, pain-wise, so go figure).  One other thing is that the chemo brings on these constant breaks in the skin where my lower lip and my upper lip meet.  This has been pretty constant throughout the chemo, although again not as much in the current Seventh Session.  So I am very apprehensive about seeing a dentist and having to keep my mouth open with these types of sores.  One last thing is that I can only see the dentist on the week I have chemo, so they can assess, through my bloodwork, if there have been any issues.  I am sucking it up and trying to see a dentist recommended by Karla's friend Rachel who lived in this area, but it may take a while given I can only do a Monday or Tuesday every second week.

Back to chemo - Day 7 SUCKS.  Can't say it any other way. It totally knocked me out fatigue-wise this past Tuesday, and in general, if I am going to have any issues, they seem to occur on this day.  It happens to coincide with going off the steroid they give me to maintain my energy levels and I think that pretty much explains it.  Some Day 7's, I handle it well and others, not so much.

Each day following Day 7 (today is essentially Day 12 in this session) has some good parts and some bad parts.  Honestly, the good parts far, far outweigh the bad parts as long as I am diligent with my meds.  I am trying to start walking again and while I was not able to go apple-picking with the rest of the family (and my cousin Katie from Scotland, who had a symposium in Boston, was visiting from Scotland), I was able to get a lot done today.

The family is great.  Here is a photo I like to call: "Here comes trouble". Isla started ballet this past weekend and really enjoyed it.  Graeme just can't help smiling when he is around his sister, which is great to see.

Karla and our au pair Amarilis are well.  Amarilis is really becoming a part of the family and she is so patient with Isla. When not dealing with Graeme, Karla has been resolving a lot of issues associated with the new house including getting all the utilities set up and evaluating the work that's being done.  We now have full AC which is nice, and next we have to decide what we are going to do about our ancient oil boiler.  Let it ride for another year, buy a new oil boiler, or explore other forms of energy generation (mainly geothermal because we have no link to natural gas in our neighborhood, solar would not give us a big enough footprint, and we don't even want to go down the path of wind power).

We had a landscaper in, which was awesome.  He cleaned out what looked like an old climbing frame in the backyard, and it seems sturdy and strong enough for Isla to use which she does every day.

I'm planning on attending my company's annual meeting on October 1-2 in Providence.  This will be a big step for me as I have not been on an office or client site in the past nine months.  The good thing is that it is only 25 miles from our house, and if I feel bad, I can just go up and lie down in the hotel room (and I have several people that could drive me home if need be).  Obviously, I miss out on some of the festivities around the bar, but it will be nice to see a lot of my co-workers in person again.

The Luck of my Cousin Simon

September 14, 2014

I just wanted to post something about the luck of my cousin Simon. Some of you have met him over here (he visited Denver on a conference just days after Isla was born). Here is a picture of the two of them at our Denver home.  The unusual thing about this photo is that Isla is crying, because when we visit overseas, you usually see Simon covered by the laughing offspring of my other cousins. 

Just a few weeks ago, Simon got married to his fiancee Charlie (Charlotte).  Unfortunately, we were unable to attend the ceremony but it sounded like a good time was had by all.  Here is a photo from the wedding of Simon and Charlie.



Now you may ask, why am I posting photos of cousin Simon on my blog, other than the fact that on my mother's side, he is the last cousin to get married?  It's because Simon seems to encounter some incredible bad luck but come out of it OK.  He and Charlie went for their honeymoon to the island of Ibiza in the Mediterranean.  They had a great time there, but the way back was somewhat exciting.  Actually, Simon described it as such on his Facebook page: "Amazing wedding weekend, beautiful, relaxing honeymoon and a rather exciting journey home..."

Here is the article in the newspaper from BBC.com:

Jet2 passengers escaped along wing after emergency landing

Passengers on a plane that made an emergency landing have described how they forced open a door and jumped from the wing.  Jet2 said the flight, which landed at East Midlands Airport at 21:10 BST on Wednesday, had a "minor electrical fault". A passenger on the Ibiza flight said there was a "strong... burning smell".  Another man said cabin crew lost control on the ground, which led to panic and people trying to escape.

On its website, the Air Accidents Investigation Bureau (AAIB) said it sent a team "to investigate a serious incident to a commercial airliner that occurred at East Midlands Airport", on Wednesday evening.  An airport spokesman said three other flights were diverted to Birmingham and full safety procedures were followed. The Boeing 737 jet can carry up to 150 passengers.

Kyle Charles, from Strelley Village, Nottinghamshire, said: "We circled above the airport and tried but failed to land. "We landed on the second attempt. When we landed it turned into sheer carnage."
Mr Charles said one member of the cabin crew kept screaming over and over: "Get off the plane everybody now!"

He said the crew opened the main doors at the back and front of the plane, where the inflatable chutes drop down, but not the ones over the wings.  His friend Rob forced one of the doors open, ran to the end of the wing and jumped down on to the tarmac.  He then helped other passengers who were running along the wings down on to the runway.  Malcolm Yates, who was also on the flight, said the intercom failed and there was no communication between cabin staff and passengers in the air.

"We soon saw the fire engines lined up," he said. "You could smell the burning, a strong electrical burning smell. That's when people started to panic, screaming 'get the kids off!'  "The stewardess kicked the door down up the front. I remember her taking a great big lunge for it to smash it down."(Comment from Andrew - "Seriously!!?? This is how Jet 2 trains its staff??  I know what airline I won't use if I am doing any inter-European flights in the future)").

A Jet2 spokesperson said: "Following a safe arrival at East Midlands Airport of flight LS644 we decided to disembark passengers as quickly as possible as a precautionary safety measure because a minor electrical problem led to some smoke in the cabin.

"All passengers were looked after by our airport team and a full investigation is now under way. The safety of our passengers is of paramount importance."

Andrew again: you really do have to be careful of the discount airlines in Europe, as sometimes the standards to which they are held are significantly less than what you would expect here.  In any case, I labeled this article the "luck of my cousin Simon" because Simon has experienced some additional bad luck in the past, but is still around to talk about it.  On December 26, 2004, Simon was vacationing in Phuket, Thailand on the day when the massive tsunami hit and wiped out the town (and many others around the Indian Ocean).  Simon and his girlfriend had to run up a hill to escape the water as it rushed in. This girlfriend was a nurse and they were both able to help out in the aftermath before heading for home. 

 

 

The Move

Tuesday, September 2, 2014

So I have been silent for a while and I do apologize to all of you who read this blog.  So much has happened since the fourth chemo session on this second regimen of drugs.  Most of the focus has been on us moving from North Boston (Reading) to South Boston (South Walpole).  I thought I'd describe the move in one post, and then any thoughts on the two chemo sessions in another.

So the move...I think most of you are aware that Karla and I had left our permanent home in Denver a few years ago to take a temporary assignment in Vermont.  The opportunity was too good to pass up in this line of work - instead of having to fly out Monday and fly back Thursday, Karla, Isla and I would all be together in one place, and I would drive home from work each day.  The assignment itself was a good step-up for me to, running a full project as Project Manager. So RSI got us temporary housing in Vermont and we stayed there through last summer (2013).

The Vermont project was winding down at that time so I started commuting Monday to Thursday to Boston to work on a project there. Eventually, Karla and Isla also moved down in early November, 2013 and we had temporary housing in Reading, MA.  Everything worked well for a couple of months until I got sick in late December.  Decisions had to be made, and we determined that for my health, Boston, with the Dana-Farber Clinic would be the best place to make our permanent home, rather than move back to Denver. Boston, especially North Boston, is a tough place to find a reasonably priced home, so we focused our efforts to the Southwest. We found a great place that needed some work and pursued it for a good three months until the price came down to a reasonable number. We took possession on July 31, with a move-in date scheduled for Thursday, August 28.

There really was not a lot to do to prepare for the move.  We hadn't unpacked almost a third of our stuff, that still lay packed in boxes in our garage.  In addition, RSI was helping with the packing cost so we really didn't have to worry about getting stuff ready.  The packers would do that for us.

We went with a moving company named Gentle Giant, and I cannot recommend them more highly.  The packing and the move were handled professionally and with great care. The funny thing was the staff themselves - generally good-looking guys of college age wearing muscle shirts with the company logo.  I think Karla, Amarilis and even my Mom stole some extra glances here and there!!  I forgot to mention that my parents came down to assist with the move.  My brother and his family were also supposed to come down, but unfortunately, an illness in the family kept them up in Ottawa.

So they packed up most stuff on Wednesday, August 27th, and actually loaded a lot of the stuff in the first truck.  They left our beds so we were able to sleep at home in Reading that night without worrying about a hotel...well, except for Mom and Dad.  The Reading house is just not big enough for guests to sleep over comfortably, as Amarilis uses the extra bedroom.  Think of it as a "corporate townhome".  It was going to be sad to leave the pool behind that lay in the center of the complex.  Isla had made a lot of friends there, and that had lead to Karla also making some friends with the children's parents.  Unfortunately, we are all transient, and most of those friends had moved on or would also be moving on like us.   I think Karla is going to stay in touch with some of the parents she met. We hope Isla makes some good friends in our new neighborhood.  There do seem to be some little kids about but without a pool as a focal point, meeting them will be somewhat random. 

Moving day on August 28th went smoothly. Everything was packed and loaded into the two moving trucks by noon, and our convoy headed down I-95. The movers were able to unpack everything with extremely minimal damage (one old bookshelf) and the unpacking began in earnest.  I can't fault the movers for labeling but trying to find certain things that first night was a struggle (nail clippers for instance were not logged as a separate item in a Master Bathroom box so we had no idea where they were - go figure??? sarcasm was definitely intended in that sentence!!).

The contractors had done a FANTASTIC job on the house.  It was about 85% complete but definitely in good enough shape for us to move in.  Every room had been repainted, and all of the floors on the first and second floor had been replaced by oak hardwood, with an amazing dark stain.  I could not believe this was my house we were looking at.  They had remodeled the kitchen, inserting new cabinets and counter tops and it looked beautiful.  We had pretty much not done anything else because costs are extreme for remodeling.  Maybe down the road we will get that nice Master Bath...

On the ground floor are a dining room, family room, living room, open foyer, kitchen, powder room (no m ore having to go upstairs or down stairs to go to the bathroom - whoopee!!!  It sounds petty, but it does make a difference.  Also a bedroom and bathroom for Amarilis.

On the second floor are a bedroom for Isla, a bedroom for Graeme, a bathroom that they will share, and then a Master bedroom with its own bathroom and walk-in closet. Also, an office where I will work, with an additional doorway inside that leads to stairs up to the third floor.  We have some gripes with how the owners spent their money on the house...seriously, no AC???  But the third floor, essentially the attic, finished and fully carpeted is awesome.  We plan to use it as a guest room for now, as well as an area where Karla can do her sewing.

We also have a basement, unfinished, with tons of space for storage, and with the potential to be finished in the future.  Probably a long time down the road, to be honest.  I have to give thanks again to my parents, without whose support we could never have afforded the house, and Karla's parents for giving us the financial backing to remodel the kitchen.  We were so scared we'd have to rent in Boston, and with rents close to $3,500 for the type of townhome we'd need (forget about a house), we just saw our finances going by-by.

So over the holiday weekend through yesterday, Mom, Dad, Karla and I started attacking all of the boxes needing unpacking.  My parents amazed me, over 75 and lifting, moving, putting stuff together  (yes, we did buy some Ikea stuff, I think an Aufgurshiltblat kitchen table with chairs, and the Blausperfunktsind wardrobe for Amarilis' room (she had no closet)). Dad took them on with flair and applied all of his engineering skills in putting them together, and re-acquainting himself with an Allan key. We'd also taken delivery of a new washer/dryer, dishwasher, and fridge from Sears.  For some reason, they felt that a white fridge would go better with the other stainless steel appliances (I mean, that's so obvious, right?).  And when we pointed out the discrepancy, they discovered the stainless steel version had been discontinued. So we are using the white fridge until that time when Sears can give us a stainless steel fridge that is comparable to what we should have been given.

So we have made several Ikea runs, many runs to Lowe's and Home Depot, and have really got the house looking good.  We have some additional furniture for the family room (a sectional couch) as well as dining room table to come from Jordan's, a big retailer up here in Boston.  They should come around  mid-September.  Then we can move my 2001 single guy stuff to the front living room.

How have I done, as a cancer patient, trying to deal with all this??  I think the best answer is good and bad. I have surprised myself by how much I have been able to do.  Each day, we got up around 8 had breakfast, and as long as I took a couple of Oxycodone (again not Oxycontin) pills every four hours or so, I would feel some rejuvenation, and be able to continue working. I have not experienced any negative feelings, and when I go to chemo tomorrow to start session 7, I think I'm in as good as shape as I've been in since this whole curtain dropped down all over me.

On the negative side, I've really become somewhat of an asshole when responding to people. I am short with Karla and my parents, and Have said some mean things sometimes, and my filters have not been up when Isla is around (ie. she hears me whining at Karla or Dad).  After the fact, I feel terrible, but I can't seem to control my emotions and what I am saying in the moment. I am really going to try and focus on controlling this side of me (which at this level, has never existed before) so I stop hurting the people I love. 

Also, my memory and how I am processing what people say to me is not quite where it should be. I remember some things completely different from how Karla or my parent remember things, mainly around conversations.  Also, my Dad may ask me a question, and I completely misunderstand what was asked.  Before any of you say that it's because of his "Weegee" accent, I am having similar problems with Karla.  I have to really stop and focus on what people tell me sometimes (not all the time).  I'm fine when I sit down at a computer and can think things through, but again, it's conversationally that I am having problems).  That may also be leading to some of the issues I described in the previous paragraph.

I'll talk to Dr. Wolpin at Dana-Farber about this tomorrow.  Hopefully he can shed some insight on these issues.  Karla thinks I have so many drugs going in and out of my system, that it's no wonder I have problems.

I think this is where I will sop this post.  If I'm feeling up to it, I may write about some of my experiences in the past two sessions when I am hooked up to the machines tomorrow.  However, I have found it difficult on this second regimen to focus on things (like training courses from work) while I have been hooked up.  I dread tomorrow, mainly because of the cold sweats.  They will be with me from when I leave the hospital at two pm to two am or so.  Not a lot of sleep to be had.

Goodbye all and talk soon

Better Photos of the Kids

I got some gripes that the passport photos of the kids were a bit serious so here are some better photo studio shots from the past two months:

 

Fourth Chemo (Regimen 2)

August 10-12, 2014

Sorry for the delay in writing. I'm actually five days into the fifth chemo, but the delay in writing is actually a good thing. I'm feeling quite good under this new regimen, and overall, just very thankful for where I am, the health of my family, the new house that we will be moving into, just everything in general.

We also received some very good news from the latest CT scan...well, we weren't actually scheduled for a scan, but if you remember, last session, I got really fatigued and they were worried I might have a blood clot.  So they did a CT scan on the upper part of my chest, but it also picked up my lungs and a good portion of my liver and they showed some shrinkage on the lungs and no growth on the liver.  Fantastic news!!!  We'll probably do the next CT scan sometime in early September so hopefully the progression continues.

I talked to you about some of the side effects I am experiencing in previous emails, and really, the three that most frustrate me are the cold sweats on Day 1, the neuropathy which so far has not gone away, and the fatigue that hits me as I come off the steroid.  The cold sweats are just the worst - no matter what I do, I just sweat for no reason - I'm not hot or cold.  I tried sleeping on an air mattress in the office room but every time I fell asleep, I woke up drenched.  I go through about 10 towels and five or six change of clothes and I think I am stuck with this throughout this regimen.  Oh well, one day is not so bad. The neuropathy stayed about the same - I think I am also stuck with it throughout this regimen.  The good news is that on Day 7, instead of going to the hospital like last time, I made it through the day, so progress!!

I haven't talked much about it, but we have been in the process of buying a house here in the Boston area.  We have been living in a corporate rental, because my assignment here was supposed to be temporary and end at the end of August.  Of course, that has all changed, and we decided that rather than move back to Denver, we are going to settle permanently here in Boston.  There are many reasons for this decision, the top one being the level of medical care that I can get here.  The Dana-Farber Clinic is one of the top cancer clinics in the country, and I just can't get that coverage in Denver.  Other reasons include proximity to family, good opportunities for Karla due to a significant deaf community here, and also good opportunities for me with RSI, as five of our client states are in short driving distance.  The reality of my life is that I am highly unlikely to go back to traveling by plane 4 days per week (which I would likely have to do from Denver), and to be honest, I'm not even ready yet to be on client site on a regular basis (I really don't know how I'll react to fatigue and side effects on a daily basis).  We have had significant support from our parents in allowing us to be able to get a house - honestly, we could not do it without them. We spent a good four months looking mainly in the Reading area, but prices are just ridiculous.  We settled on a fixer-upper (mainly cosmetic fixes) in South Walpole which is to the southwest of Boston.  It's a great house and we closed on it on July 31.  There was some work to be done on it (mainly floors and walls) so we won't actually move until August 28.

Leslie Geraghty also came up for a few days from Jersey on August 6-8.  It was great to see Les again and she got to spend some quality time with Graeme.  I can't believe how lucky Karla and I are to have the friends we do.  Les is one of those people who just makes you feel at ease. Hopefully, we may get to see the whole Geraghty clan sometime in the fall.

Isla and Graeme continue to amaze me every day.  I find myself, as a 48 year old, looking over at them and saying to myself: "I have a little girl and a little boy", and just shaking my head.  It's unbelievable how much life they bring to our house.  Seriously, just a wry smile from Graeme or an offhand comment from Isla and I can completely forget about what's going on in my life.

I did want to make a comment about Robin Williams.  I can't begin to know or understand how depression affects people, and so any comments I make in this paragraph are made with ignorance on the subject. But I just can't believe, as I fight and fight to be a part of my children's lives long term that someone would choose to leave this life.  I feel sadness at his passing but also some anger as he left three children behind.  Again, I can't begin to understand what was going through his head, but my children are going to get every last ounce out of me (whether they like or not!).

Love to all

Andrew

Third Chemo (Regimen 2)

July 21, 2014

Hi all.  Two days away from my next chemo session so I thought I would give you an update.  We are expecting my parents this evening and they will be staying in the area through Saturday. I find that I value each visit from them more and more, not only for the impact they have on my kids but also for the conversations and discussions we have as a family.  It's a tall order to ask them to come down every month but they are up to the task.  Also hoping to catch up with Michelle Biggs who is in town next weekend. I can't believe we all graduated from McGill 22 years ago now...

So lets talk about the chemo first and then same family updates to follow.  Day 1 (July 9) started at the clinic.  We see a great nurse, Heather, who has been able to manage to cold sweats at the hospital.  Unfortunately, they do not go away until the morning of Day 2 so it's pretty miserable that first night.  This time, I slept on towels on the couch and changed clothes frequently. I will say that Day 2 and Day 3, on this new regimen, once the sweats are over, is quite manageable.  So much so that I was confident that I could handle visitors on the weekend, so Mike Wulfkuhle and Jayne Yelich flew out from Denver and Scott and Pam Hastings drove up from New Jersey.  It was a great visit and we even got to eat out at Strega Prime Italian Steakhouse on Saturday night, which was an amazing dinner. And we got to see photos of the owner with pretty much every famous Italian American of whom you could think.

Monday was an OK day but Tuesday (Day 7) was a disaster.  I could hardly move, I was so fatigued. I also had this weird feeling in my upper chest that I'd been hit by a puck or a punch. I lay in bed for most of the day and was unable to work.  Karla booked a checkup appointment for the next day at the clinic. I was feeling better on Wednesday when I woke up, but maybe 75% of where I should be so we decided to go in. It turned into a long day at the clinic where I was infused with potassium and saline (my levels were extremely low - not sure why).  I was also given a prescription for potassium pills that are so big, a horse would have trouble getting them down.  I also went for a CT scan (but not one that would look at my cancer levels).  Instead the scan focused on my upper chest, as my doctor was worried about blood clots.  The tests came back negative but nothing to indicate why I had such a bad Tuesday.

Since then, I've felt pretty good for the most part.  I'm a bit slow to start in the morning but after taking my medication, I seem to respond quite positively.  A bit of a boost in the afternoon has also paid some dividends. Seriously, if my Day 10 - Day 13 feeling becomes more consistent, then I can start thinking about doing additional things (walking, running errands, appearing on American Ninja Warrior, that kind of stuff).

Still dealing with the neuropathy.  It makes me feel like a bit of a dork sometimes.  I can't open certain containers, I randomly drop things, I can't really "feel" Graeme and Isla when I touch them. I also got my hair cut short.  I don't know if chemo is thinning my hair of 48 years on this planet.  However, chemo has definitely changed the texture and consistency of my hair.  We got some passport photos taken this weekend, so it should give you an idea of what to expect.

As you can see, the family is all well.  Graeme is smiling more, and he usually starts with a wry smile to the left, and then a full on smile.  I love getting that feedback from him. I even got him to laugh with me the other night, although his laughs right now consist of coos, exclamations and other noises, and not necessarily what you would call a full-onlaugh.

Isla is awesome. She and our au pair Amarilis spend a lot of time at the pool, and we are now at the point where she gets lessons on Monday at the local YMCA. She has entered a new phase where sometimes she wants to accompany Mommy or Daddy no matter what they are up to.  Daddy is learning a lot more patience! She's still into Frozen, but now with a smattering of Brave. I also read her Tintin books some nights, but oh my God, some of the language, violence and treatment of others of different races has to be very carefully edited...

Congrats to Rory McIlroy on his British Open win. Maybe Tiger is not the person we should be focusing on to break Jack's records.

Love to all of you.

Andrew

Thoughts on the World Cup

June 12

Just wanted to write down some thoughts on the 2014 edition of the World Cup:

1. Location in Brazil.  I think it has been quite a success in Brazil so far.  The naysayers were out in force before the tournament, but it appears that thinks are working out nicely (knock on wood) as I write this before the last game.  Sure, there are some negatives, I mean who builds a 50,000 seat stadium in the middle of the jungle for a city that doesn't have a major airport, nor a major soccer team.  I don't see the stadium in Manaus turning out to be anything but the white elephant that it is.  On the flip side, it has been wonderful to see the celebrations on the beach at Copacabana.  Karla and I spend wonderful bookends to our South American vacation in Rio and loved the place.  We are glad the rest of the world is seeing it in all its glory.  Whether it will be able to host the Olympics on its own in a few years remains to be seen, but as a soccer host, it's been great and we can't wait to see the final at Maracana (where Karla and I got to see Flamengo vs Fluminense).  Should be great.

2. Overall quality of the soccer. I have one word...brutal.  I had no idea that soccer had come to this point in development where tackles are late, studs are up, full body checks are legal and referees have decided that yellow cards are unnecessary.  Don't get me wrong, I have enjoyed a lot of the play, and watching Neymar, James, Messi and Muller has been a joy to see such skill displayed on the field. But watching Neymar go out on an obvious, and unpenalized, tackle by Zuniga (keep wanting to call him Daphne for some reason...) as well as the excessively late tackles from behind committed by all teams has disgusted me.  I know the refs have been instructed by FiFA to lay off on the cards so the good players aren't suspended, but come on, it was getting ridiculous. 

3. The play of the Brazilian team.  Very disappointing.  You can lump England in there too, but Brazil stands out above the rest.  They are at home, and coming of a major championship last year.  I expected to see offensive flair and finesse from them, and while Neymar provided some of that flair in the opening rounds, where were Fred, Oscar, Jo and others of whom I've heard so much about.  Fred also loses big time in choice of nickname.  "Fred"?  I know that Brazilians have excessively long names and choose nicknames to make thing simpler (did you know that Brazilian great Pele was really Edson Arantes do Nascimento? - quite a name on the back of the shirt! But Fred???  How about Barney, or Nigel (or just Nige for short).  Even Kaka was better at a previous cup.  But enough on the names, their play has been brutal.  Did you see the Colombia game where Neymar got hurt?  The Brazilians were worse.  There were six fouls on James (Colombia's star) alone, something that should have garnered several cards.  But what did Brazil get a card for??  Something as infantile as Thiago Silva knocking the ball out of the goalie's hands as he was about to kick it.  Just dumb.  Instead of being impressed with their playmaking, I was disgusted by their style.  And don't get me started on Hulk...

4. The play of the CONCACAF teams.  Three of our group got to the final 16.  Great accomplishment and hope for Canada down the road.  And the Ticos getting to the quarters.  Awesome stuff.  Sure I would have like to see the US progress, but a fine showing from a young team who will be better in four years in Russia.

5. Finally, can't complain about the final.  Germany Argentina should be a great game (Germany Netherlands would have been great too).  I'm hoping we see an all out match, rather than what we saw in the Argentina Netherlands semi, and I predict a German win.  Not sure what Brazilian team will show up today in the third place match.

Andrew

Second Chemo (Regimen 2)

July 11

I'm at home on Day 3 of being infused with chemo on the Third chemo session of Regimen 2.  So what happened over the past two weeks during the Second session:

So same experiences at the clinic with respect to the cold sweats: they really start coming on near the end of my infusion on site, and then the continue for the remainder of the day and well into the night on that first day. I basically was awake until 1AM until I felt somewhat comfortable enough to lie in bed with towels underneath me.  Several cold changes over the night.  The sweats start to subside by Day 2. As happened during the first session, no jaw pain on Day 2, so perhaps that is a thing of the past.

Over the course of the next two weeks, there were good days and bad days (sometimes good hours and bad hours).  The neuropathy came on really strong, which was surprising to me as I thought it would start going away, and not get worse.  However, I've since heard that the new drug Irinotecan, while not increasing any of the previous side effects, also does not do much for healing of those side effects, so I should expect the neuropathy to hang around a bit.  I have to get Karla to open certain things and cutting fingernails has become a chore, but I'll deal with it.

I think the toughest thing is knowing that I am not going to get a break from chemo, and will continue to be on these two week schedules for the near to long future. I am scheduled out to September now and will just keep plugging away.  I can work, and I can do some chores around the house, but I just have to take it slow and not overdo things.  I am forcing myself to take naps on work days and that seems to be helping.

The family is all well.  Graeme is starting to sleep for longer periods at night, which is giving Karla some breaks.  He really is a great little boy.  His favorite spot is the baby swing, which has a mobile suspended above him.  He laughs and giggles a lot in their, more so than when he is held by Karla, Amarilis or I. It's really cute. Isla is fascinated with Disney's Frozen, and can't stop talking about Anna and Elsa.  She watches the movie frequently and insists on Frozen books before bed.  She and Amarilis are making full use of the complex's pool each day, and she has made many friends there, which is great.





I think I'll write a separate blog over the next few days to express my thoughts on the World Cup.  It has been thoroughly entertaining, to say the least.  And for all of you who send texts and emails, thanks so much.  Sometimes it takes me a while to respond, and I apologize for that, but know that I love to hear from all of you, especially as some of us are so far apart.


Love to all of you.

Andrew

Third CT Scan and First Chemo (Regimen 2)

June 24

I'm at home on Day 2 of being infused with chemo on the Second chemo session of Regimen 2.  So what happened over the past two weeks:

First off, the results of the third CT scan to see if tumors were the cause of my fatigue, or was it a virus, blood issue, etc. Basically, the doctors could not see anything that would be causing my issues aside from the chemo regimen itself.  they had hoped to go at least one more session on the old regimen, especially as their had not been significant regrowth in my tumors.  Remember that the goal of the chemo session is to shrink/reduce the tumors or at least slow regrowth.  However, because of the serious issues I was feeling with fatigue and that I was starting to get more serious neuropathy with the first regiment, the decision was made to move on to the next chemo regimen.

I do want to stress that while there has been some regrowth in the tumors, I am nowhere near were I was in January.  The tumors are still smaller and less dense, but as the third CT scan results showed, they were starting to make a comeback.

The second regiment would be like the first, still using the Antivastin, and still three days of the 5-FU infused slowly.  The change would be to replace the Oxalyplatin with a new drug called Irinotecan.  Its side effect are more moderate, mainly diarrhea during the three day infusion which can be managed quite effectively through Immodium.  So no more increases in neuropathy (although it may take months for the effects of the Oxalyplatin to go away completely). Also, I may not experience the jaw pain that has plagues me on Day 2 of most of the first nine sessions.

So I got my infusion started, including a second blood transfusion because of low numbers in some of my blood levels.  What is still frustrating is the sweats I get in  conjunction with the chemo and the seem to last a long way into the night especially on Day 1.  They are not painful in any way, but having to change you clothing constantly is somewhat unpleasant.

In any case the second regimen went fantastic and essentially was like the fifth or sixth regimen under the first chemo plan.  The major fatigue, is gone, as is the jaw pain and I was able to put in some solid full day work for RSI. In a much better place which is great, as a lot of stuff has been going  on.

Graeme is growing like gangbusters.  He was well over 10 pounds at his one month session.  He is feeding well and is having no issues with the breast milk, nor is Karla having any issues with production.  When he poos, the whole house knows it as do the neighbors, I think, as he makes the loudest sounds.  His sleep patterns are generally very good but so far, four hours seems to be the maximum at on time.


We had a nice visit last weekend from my brother Jamie and his family. Isla was ecstatic at having her cousins around fro three days.  Jamie took Isla and Amaralis whale watching on one day and they saw over 30 humpbacks, some breaching which was very exciting.

Because the Vermont Steering Committee meeting is this Thursday, June 26th, we moved my chemo session to yesterday.  So far so good on the second chemo session of the second regimen.

Also, having fun watching the World Cup, Can't believe the US let in a goal in the 95th minute this past weekend, but I think sitting with a win and a tie after the first two games is better than expected.  Big game against Germany on Thursday.

So bye from a good place.  Will write a new blog soon.

Andrew

Chemotherapy and the Cath-Port

June 24 - Note: I wrote most of this a month ago, but haven't posted until now.  Gives a good explanation of the chemo cycles I go through:


Chemotherapy is the treatment of cancer through medicines or drugs that attack and kill the cancer cells. It is a systemic therapy (unlike radiation or surgery) in that the treatment goes throughout the entire body.  Most chemotherapeutic drugs are taken as a liquid injection into a vein, while others are taken as a pill.  The cool thing about what's available to me today (as opposed to 20 years ago) is what are called combination therapies. There are many different chemotherapy drugs and often, they are used to treat the cancer more aggressively.  It also reduces the likelihood that the cancer would become resistant to any single chemo drug.

Taking it a step further are targeted chemotherapy regimens, which are designed to attack specific cell pathways used by cancers to survive and grow. These new treatments capitalize on advances in understanding cancer at the molecular level.  By interfering with the pathways, cancer cells are unable to grow, and instead commit a type of "suicide", called apoptosis.  Also, blood vessels that grow and feed cancer cells are halted, called antiangiogenesis.

I have Stage IV Metastatic Colorectal Cancer (mCRC for short). What the doctors have set up for me, based on my tumors is a three-pronged approach using the following drugs: Fluorouracil (5-FU) plus Leucovorin calcium, Oxaliplatin, and the antiangiogenic drug Bevacizumab (better known as Avastin).  Together, they call my treatment mFOLFOX + Avastin.

The 5-FU and Leucovorin is the more traditional chemotherapy for mCRC.  This has been around for 40 years and works by binding to an enzyme needed for making DNA. Cancer cells that no longer have this enzyme available are more likely to die when they try to divide in two. Normally 5-FU binds it for only a short time, which limits how effective 5-FU can be. Leucovorin causes this binding to last for a longer period of time, which boosts the effect of 5-FU.

Oxaliplatin is a platinum-compound chemotherapy drug that acts as an alkylating agent. It stops the growth of cancer cells, which causes the cells to die. It is now used in conjunction with 5-FU. While it has been around a while, it really has only been in full use since 2009.

Finally, Avastin which is an antibody drug that binds to and neutralizes a specific protein directly related to the mCRC.  It was approved in 2006 to be used in combination with mFOLFOX therapy.  This is a wonder drug that is blasting away at my tumors.

How do I get these drugs? While I am at the hospital on the Wednesday, I get the half hour blast of Avastin through an IV connected to an IV "tower" that if you are not directly familiar, appears on most TV medical dramas. I also get the Leucovorin and Oxaliplatin through similar IVs, that also are connected to an IV Tower.  These take a bit longer, from an hour and a half to two hours. I can take them all simultaneously through my cath-port which is convenient.  They supply me with 8mg of Dexamethasone, a steroid that as mentioned earlier, stimulates the adrenal gland so I am not a zombie through this process, but can actively function from my hospital chair.  I usually do a training course through RSI at this time, to help me acquire the necessary credits to maintain my Project Management Professional (PMP) designation. Because I am doped up on the one hand, and being drained by chemo on the other, I try not to do any "heavy-lifting" work wise - no detailed analysis or major decision-making that could affect my work. Training makes a good alternative.

Once the three iVs are complete, I am then hooked up to the portable infuser through the same cath-port.  This will be hooked up to me for the next 46 hours, and then disconnected by Nurse Karla at home on the Friday. It also tends to drain me and cause some side effects, so I continue to take the dexamethasone, albeit is smaller quantities, over the next six days to help manage the "downs" associated with the chemo.  As I have mentioned in the blogs describing each session, we seem to be getting to a point where the management of the ups and downs is quite successful, for the most part.

What is a cath-port? It's a small device (about the size of two quarters placed side-by-side) that was surgically implanted under my skin in the right chest area to carry medicine into the bloodstream.  It has two small 'basins' that are sealed with a soft silicon top (the septum).  The port connects to a small, soft tube called a catheter.  The catheter was surgically placed inside one of the large central veins that take blood to my heart (so no need to search for veins every two weeks).  The chemotherapy drugs are infused into my bloodstream through a special needle that is placed into the septum every two weeks. Medicine and fluids are sent through the needle and blood samples can also be withdrawn.

After my chemo session is over, Karla is currently hooking me up to an IV bag of saline to help with my hydration post chemo.  After the IV fluids are finished, Karla cleans the port by injecting heparin through the needle - this prevents blood clots from blocking the port (heparin thins the blood).  Once that is complete, she removes the needle, and apart from a slight bump on my chest, you wouldn't know I had the port at all. It's pretty cool that this is available to me - I have heard horror stories of nurses searching for veins for some patients.  This also provides us with the ability to manage treatments from home without having to return to the clinic multiple times.

June 24 - Additional note: I will discuss this more in my next chemo blog, but on June 11, we stopped the use of Oxalyplatin and replaced it with a new drug called Irinotecan. I was developing too may side effect with the Oxalyplatin and the CT scans and my reactions to the drug drove my doctors to decide to move on to the next chemo regiment that included the Irinotecan.  I should see less side effects, and hopefully an improvement in the progress against my tumors.

Second CT Scan and Ninth Chemo

June 7, 2014

Normally, you would have already seen a blog update from me, as I tend to write them just before the next session, and per the schedule, I should now be in the middle of the tenth chemo session.  However, we did not start the tenth session on Wednesday (June 4) as scheduled and it has been pushed to next week.  I'll get into that in a bit, but there's a lot that's gone on in the past two and a half weeks since I last wrote.

First, the ninth chemo session started on Wednesday, May 21st. My Dad brought me into the clinic for this session, as Karla was home with baby Graeme. Like all sessions, before it started, we met with either my doctor or nurse practitioner (in this case it was Nina the NP) to discuss how the previous session went, whether changes were needed, etc. This discussion was more significant because we would also discuss the results of the CT scan I had undergone the previous week. Karla was dialed in through the cellphone. Unfortunately, the results were not as great as the first CT scan. There was some slight regrowth in the tumors (7%) which Nina indicated was actually a positive result, as this showed the chemo had maintained stability over the tumors since the previous session (anything under 20% is considered stable). I don't think Karla and I could quite bring ourselves to look on this as positive, but we do understand the situation I'm in - there is very little chance that the tumors in my body will be eradicated, so the point of the chemo sessions is to keep the tumors at bay, either shrinking them or at a minimum, holding them steady(and thus prolonging my life). So, this is not bad news, more 'meh' news.

There are numerous different chemo regimens that can be used against the cancer, and what we are pursuing is just the first of those regimens.  There are many more in reserve, so to speak.  This regimen was going to come to an end soon in any case, before one of the drugs (Oxalyplatin) did permanent damage to my nerves (the neuropathy side effect I have discussed in previous posts). I had actually been feeling the neuropathy more prevalently in recent weeks. So, Nina's recommendation was to scale back on the dosage of the Oxalyplatin for this session but to continue with the current regimen for this session. So I got hooked up to the different IVs, and then after completing the on site infusion, went home and completed the three day home infusion.

One thing we noticed as the days progressed is that the fatigue I had been experiencing seemed to be a lot worse. I was waking up unrefreshed, and by lunch time, was almost out of gas.  An afternoon nap couldn't really bring back my energy, and I was going to bed immediately after dinner.  This was becoming exceedingly frustrating for me, as it was getting harder to put in a full day of RSI work, let alone have anything left for my family.

A quick aside here - during this session, Karla's brother Chris and his family came up and paid us a visit from New Jersey. They stayed at a nearby hotel (they have five children so there was no way all of us could have stayed in our small house) and came over each day to visit.  It was great to see them again, as Isla had never met her cousins on the DeGaetano side. It was definitely an experience for her, having to share her toys with others, and there were a few blow-ups!  Chris and his wife Jill have done an amazing job raising the five kids, ranging in age from 2 to 11 years old. We all went and visited the newly opened Legoland in Boston. Probably more age appropriate for kids 7-14, but it was definitely an experience. Chris and Jill went back to Jersey on June 1.

Normally by this time, I'd be feeling really strong, but the fatigue has only gotten worse. My friend Ron was coming over for dinner on Tuesday, June 3, and I was hoping I'd have the energy for his visit.  But Tuesday turned out to be a really weird day, side effect-wise.  At 9:30, I took some Ibuprofen and started with some cold sweats early on.  These subsided and by lunch time around 1PM, it was like a switch got turned on and I had some energy again, like a normal day before the next chemo session. I cranked out some RSI work over the next four and a half hour, but then got really cold and shivery and no amount of blankets could cool me down.  So Ron's visit consisted of me being under blankets the whole time having shivery conversations.

June 10

I picked up the blog a few days later, as I was quite fatigued over the next few days and a number of things happened.  I went in the for the 10th chemo session on June 4, but unfortunately had a bit of a fever approaching 101% degrees, so no chemo this week,  The doctor felt it would be better to wait a week and in the meantime, see if the could isolate my fatigue.  So we spent the rest of Wednesday getting blood cultures, loading up on IV fluid and being rescheduled to next Wednesday for the 10th session.

Unfortunately, when we got back home, my fever went up again.  Karla called Dr. Wolpin and he recommended going to the hospital.  So we loaded back up into the car and drove downtown to the Brigham. I would be on my own here, as Karla and I did not want to bring Graeme into the emergency room.  Luckily, Dr. Wolpin had called ahead and I was seen very quickly.  I hate the Emergency room as it is like a petri dish of injuries, disease, illness, etc. and I just tried to keep myself separated as much as possible.  I had a private room quite quickly.

They took more tests, blood and vitals, and my fever had come down.  I also had a chest x-ray to make sure I did not have pneumonia.  All tests were negative but they decided to keep me over night just in case.  Probably one of the worst sleeps since baby was born, constant noise, and being woken up every few hours for vitals or bathroom break.  Overnight, Jamie decided to come down from Ottawa for a few days to provide support which was welcomed, especially if I needed to go back to hospital.  I was cleared to leave around ten, but traffic was so bad that Karla wasn't able to get me until around noon.  Finally home, quite fatigues in early afternoon so went straight to bed.  Jamie made it down, and provided major support over the next few days.

My fever did go up a bit over the next few days, but after consultation, with NP Nina, we decided to stay home over weekend and then come in on Monday for next attempt at chemo.  Unfortunely, still had a fever so pushed off chemo until Wednesday the 11th.  Instead we did another CT scan to see if tumors were the cause of my fatigue.  So spend most of the day at the clinic and drove home for dinner.  Still feeling fatigue on Tuesday, but drove in Wednesday for next chemo.

I'll describe things further in my next blog, as we actually did move forward with the next chemo on the Wednesday.

Talk soon.

Andrew

Eighth Chemo

May 20th

So the Eighth Chemo. I was actually looking forward to this session as it would be the first time since I started that I would go three weeks instead of two weeks between sessions. I felt this would provide me with many extra days of feeling great, instead of the few days on the Monday and Tuesday before the next session.

Boy was I wrong.  This has been one of the most frustrating sessions yet, and for the first time, I can't say that this session was better than the last.

I guess a harbinger of things to come happened immediately when Karla and I got home from the clinic on Day 1, on April 30th. I went inside the house while Karla walked a few laneways over to get the mail from the group mailbox. As I was hanging my jacket, I heard a thump and a cry of pain.  I opened the door to find Karla down on the front step, where she had tripped.  She did not think she had fallen on her stomach, but had taken some abrasions on her knees and hands. She had also banged her head on the front door. After calling the ob/gyn, it was decided that she needed to come into the hospital to be checked out. So we got back into the car, now with Amarilis and Isla as well and drove back into Boston, thankfully against traffic. Unfortunately, Karla HAD to drive, as I was hooked up to the infuser, and could not drive while chemo was being pumped into me.

We made it to Brigham & Women's Hospital where Karla was whisked upstairs in the maternity ward.  She had started having contractions, and we didn't know if they had been triggered by the fall, or by the trauma of the incident itself. After some observation, it was decided to keep Karla in the hospital overnight. Our next door neighbor, Colleen, volunteered to pick up Amarilis, Isla and myself so we were able to get home sometime after seven. We also had offers from both sets of parents to drive up (from Myrtle) or drive down (from Ottawa) the next day.

The next morning, Karla was cleared to leave but she was still having contractions.  The baby was fine (I think Karla's natural instinct when she fell was to protect the baby at all costs, which was why her knees and head were banged up).  So Karla drove herself home.  Her parents ended up driving up on Friday, because we really couldn't know when the baby might come, and they were so supportive over the two week period in which they were here.  It turned out that this was just a scare, and Karla did end up having Graeme as scheduled on May 12.

So the three-day infusion went pretty much as expected.  Jaw pain on Day 2 but managed with Tylenol/Ibuprofen. I actually had pretty good Day 4 and 5 over the weekend of May 3rd and 4th.  We looked at some houses and in general I felt pretty good.  I had a scheduled appointment on Monday with a Health and Fitness Consultant from the clinic.  I was hoping to get put on some kind of program I could follow going forward, but it was a bit more vague. Targeting 150 minutes a week of physical activity, and getting set up with the Livestrong foundation in the fall for a weight-based program.  Not much direction.

I did go for some long walks over the next three days, but found I was getting progressively more tired each day after the walk.  I was fighting a bit of a cold so figured it was playing around with my energy levels.  Friday was a very bad day as I ended up sleeping for a bout six hours over the course of the day.  I seemed to come out of it by the weekend, so felt I would be ready to handle the birth of Baby G over the next week.

Instead, what I found was, as each day progressed, I would come home in the evening more tired than the day before.  I was even feeling some slight pains in my stomach similar to what I had felt earlier on in the process, and called my doctor to determine if I should come in (especially as I was at the hospital right next door).  However, they felt that as long as I was not experiencing shortness of breath, I should just manage with painkillers. By Thursday, I was wiped, but managed to get Karla and baby home.

And that is pretty much what I have been going through since last Thursday (it is now Tuesday).  I wake up somewhat refreshed but as the day progresses, I get more and more tired such that by the evening, I'm ready to turn in, sometimes as early as 6:30PM. I have tried taking naps but I do not wake up refreshed. It is very frustrating as I really thought that this "extra" week was going to be a bit of a glory period.  Instead, my taste buds and neuropathy have gotten worse and I'm dealing with this extreme tiredness. I will definitely talk with my doctor tomorrow.  Karla and family feel it is the stress of the past week, the fact that I was out of the home four days straight, and maybe a lingering cold (Isla has also been sick with a cold this week) that have impacted upon me.  Logically, that makes sense, but emotionally you do start going down deep, dark alleys for which I have been able to stay away from, for the most part.

One other thing is that I had a CT Scan at the clinic last Thursday, and I will get the results tomorrow.  I am trying to keep a positive attitude going in, but this past week has thrown me for a loop. Today, one of my Vermont friends invited me up in a few years for some father-son hockey on his backyard rink, and all I can think about is that: "I have to BE there."  I'm sorry that the joy and wonder I felt with the birth of Graeme has been tempered somewhat by my health.  Let's hope that things get sorted out tomorrow.

All the best.

Andrew