Blog Updates

Okay, so somehow it has become mid-June and as my sister has pointed out I have not provided an update since May 1. (I'll let you figure out which sister pointed this out!!) Anyhow, there are a number of reasons I could use for not providing updates...been too busy, nothing to report, just not motivated, and also wondering whether anyone actually reads this thing!

I started this blog as a way to keep you all posted on Ed's condition at the same time--so I wouldn't have to repeat myself many times and you wouldn't have to always ask how things are. The reality is that things are going just fine and therefore I don't find that I have much to report.

I know, you're wondering how the heck can things be going "just fine"--but that's the truth! Ed continues his biweekly chemo treatments and has few, if any, side effects. His hair is his biggest complaint because it's thinning, but I keep reminding him that he should be thankful he hasn't lost all of his hair. Other than that, with the exception of some leg pain--which I attribute to his old age and not cancer!--he is doing well. He continues to work his regular schedule and only takes time off for the treatments themselves. His appetite is fine, he eats what he wants, he doesn't get too tired, and he has started to put on some weight. His golf league started up in April and he's been playing in that every week.

On June 7th he had another CT scan and although we were hoping to hear that the tumors are continuing to shrink, the results instead were that there has basically been no change. The reality is that this is still good news. The chemo is keeping the tumors at bay and no new tumors are present. So things are stable and that is nothing to complain about.

After some discussion with Dr. Bowers, we did decide to cut back on the Irinotecan for 2 months. This will give Ed and his body a break for a while and will cut back his IV treatments from 2.5 hrs to .5 hr. Dr. Bowers was clear that he did not want to go any longer than 2 months without then doing a CT scan and re-evaluating.

Other good news is that Ed no longer needs to take his iron pills. Back in December, he was slightly anemic which accounted for why he was so tired. A couple months ago, Dr. Bowers said he could cut back on the iron if he wanted. This month, he said "stop taking them, you don't need them."

Of course, everyone's question is "what's the prognosis?" With stage IV colon cancer, there is not a "cure", at least not at this time. Instead the chemo prolongs a patient's life and for some patients this could be 10 yrs or longer!

Bottom line, Ed is stable. Tumors are stable. And, although we still hope and pray for a miracle, we are thankful that things are going as well as they are.

So that's the latest! I can certainly do a better job at updating this blog, but I guess I need to know "Is anyone even reading this thing?" If you are, leave a comment and let me know and then I'll try to be better about writing.

In the meantime, Happy Summer and Happy Father's Day!

May Day

Sorry I haven't written in a while. On Wednesday, April 7th we left for Italy. We were scheduled to return on Saturday, April 17th, but were delayed a week due to the volcanic ash and flights being cancelled across Europe. I know, I know...no one feels sorry that we got "stuck" in Florence, Italy for an extra week. However, it was a bit unsettling when our first flight got cancelled and then our second flight got cancelled and then we weren't sure if the hotel could accommodate us. On Monday, 4/19, when we knew we were now delayed until 4/24 and we confirmed we had a room at the hotel, we could finally relax and enjoy our extra vacation time. Of course, each day we wondered when flights would resume and were not totally relieved until that happened. And then, of course, we began to worry about the volcano erupting again.

By Wednesday, international flights were getting back to normal and by Thursday domestic flights were going again (we were flying from Florence to Frankfurt to Boston). By Thursday afternoon when Florence began operating all flights we were feeling a bit more reassured that we might actually be able to leave on Saturday.

We tried not to think about the extra week of vacation time this was eating up or the extra, unplanned expenses associated with another week in Italy. Because, all-in-all, when looking back...we were fine. The family was together, we had a place to stay, and we had credit cards and ATM cards to cover expenses. We were not living in airports and there was not some major life events that required us to be back in the states.

Anyhow, all of this is to explain why I have not been good about updating this blog! At some point I plan to summarize our trip to Italy (with pictures and all), but not today.

And for those of you who are wondering, yes, the delay in our return flight did mean that Ed missed his chemo treatment that was scheduled for 4/20. My Mom called his doc, though, and got him rescheduled to Monday, 4/26. So no ill effects from that. Back into a new schedule and according to Dr B, things still look good. Ed is having a few more side effects though after this treatment. A bit more queasy, not feeling "quite right"...but I attribute that to the fact that they reduced his dosage before our trip and he went 3 weeks without treatment so his body is reacting to the increase in chemicals this week. Hopefully by next week he's feeling more "normal".

So, all-in-all, we're doing good and I hope to share pics and story from our trip in the near future!

Happy Easter

Hi all!
Sorry I haven't written in a while. Things have been busy...good busy...and thankfully not with any terrible, crappy cancer stuff! Ed continues his treatments every two weeks. He had one two weeks ago and for the first time I did not accompany him to his appointment. He certainly didn't seem to mind, but it felt weird for me to just go to work. That is how "normal" and routine these appointments have become--just like going to a regular doctor's appointment or to the dentist. He has another appointment this morning and will once again go without me.

What this means is that the biweekly chemo has become routine. Side effects are still quite minor and consist of an annoying, running nose and Ed getting tired or his legs getting achy. Other than that, though, none of the terrible side effects that can occur. He still has his hair although it has thinned which really bugs the hell out of him. I tell him its his age, not the chemo!! But in the grand scheme of things we try to keep this annoyance in perspective.

People ask about the prognosis...well, he's still got cancer...still in his colon and still spots on his liver. The good news is that the cancer cells on his liver has shrunk in response to the chemo. There is still a lump outside his esophagus that we're not sure about but it isn't causing any problems. So we continue with the chemo to continue to try to shrink the tumors. And since Ed is handling the chemo so well, there is no reason to switch this up. We will continue the regimen and I'm sure there will be another CT scan after a few more treatments so we can evaluate progress. When we started this journey, Dr. Bowers said we'd start with biweekly treatments for 6 months...May will be 6 months. So I'm sure at that time, we'll reassess where we are and whether we want to make any changes to the treatment plan.

So we've learned to live with this awful disease but we are truly blessed that Ed is doing so well with the treatments. There are so many who are so sick and can't function while on chemo. We realize how lucky we are that Ed's treatments are so routine. And we are thankful that cancer treatments have come so far that 5 months after being diagnosed with stage 4 colon cancer, we can celebrate Easter, enjoy the spring, and look forward to all that this time of year offers.

Life is good and we are blessed. Thank you all for your continued support and prayers. I know they have helped make this journey much easier!

Happy Easter! Happy Spring!

CT Scan Results

Well the day has come and gone, the day we hear the results of Ed's CT scan. The scan itself was done on Monday. I didn't go with Ed. He figured why should I sit there in the waiting room and it wasn't a big deal last time. So off he went in the morning having had his coffee with no cream (only clear liquids 3 hours before). He ended up being there a couple hours and had to drink some kind of liquid (barium?) before the CT scan inself. This was in addition to the intravenous iodine. There was a schedule and he had to drink like 8 oz every 15 mins over an hour plus. This wasn't anything he had to do last time, so we didn't expect it.

After we thought about it though, last time it was before he was diagnosed with cancer. They weren't sure what they were looking for (we were) so they did a CT scan from the lower esophagus to the colon. This time, they knew they needed to look closely from the upper chest to the colon and they were looking specifically for the tumors so they could compare growth, size, etc.

Another patient of Dr. Bowers was also there to get his CT scan. This is a gentlemen we see on our Tuesday treatment day (we don't know his name, but Ed calls him "the guy who talks a lot"). So they talked a lot and shared stories over their drinks of barium.

So that was Monday. Wednesday, March 10th was our appointment with Dr. Bowers to receive the results. On one hand, we weren't too worried thinking how can the news possibly be worse than the last CT scan (which was the first one back in November that started us on this journey). It's clear from external exams that Ed's liver has been shrinking, so the chemo has helped there. We just hoped the other tumors were responding as well.

Unfortunately, we did not receive the news that the cancer is miraculously gone. Wouldn't that have been nice?! It would have been a miracle and not what we figured we'd hear, but you can always hope, right?

So here's a run down of the results:

• The lump in his chest, outside his esophagus--this was not captured clearly on the last CT scan. Initially when Dr. Bowers and his team were reviewing the CT scan they noticed this lump and told us about it at Ed's first chemo treatment. We all agreed at that time, we'd just keep moving ahead with the current plan since the chemo certainly wasn't going to do any harm to the lump. Well, the lump is still there. It may be enlarged lymph glands, but they can't tell if it's any bigger or smaller since there was not a good capture of it initially. They could do a biopsy. If it's the colon cancer, treatment would remain the same. However, if it's a lymphona, treatment may need to change. Because it doesn't appear this lump is causing Ed any difficulty (chest pain, difficulty swallowing or eating) and we really weren't interested in doing a biopsy or changing our treatment before Italy, we agreed that we would continue on the current treatment and do another CT scan after 2-3 treatments. We could then evaluate whether the lump is getting bigger or smaller and make an informed decision about next steps.
• One lymph gland in the chest is smaller. Okay...not sure what all these lymph gland things are, but whatever...it's smaller so that's got to be a good thing!
  
• Moving down to the liver, there are still some spots, but they seem smaller and there are no new spots. There is evidence of calcification (which I haven't fully researched) but Dr. Bowers said is a good thing because it indicates death of bad cells.
• And finally in the sigmoid colon, the tumor doesn't seem to have changed but it's difficult to fully evaluate this via a CT scan. So Dr. Bowers will be speaking to Dr. Berkman about scheduling another colonoscopy to look at this more closely. Something for Ed to look forward to.
  

So no big surprises but another CT scan and a colonscopy will be in our near future. Dr. Bowers though gave us the go ahead to head to Italy and will also reduce the dosage for the treatment Ed receives the day before we leave.

Thank you all for your good thoughts and prayers. We march on...

Problem with blog fixed

Sorry about the recent problem with the pop-up ad that was taking over our blog! (Thank you Cassie for letting me know about this.) Come to find out, it was the gadget I added to count down the days until Dan returns from Italy that was causing the problem. So, unfortunately, I had to remove it. Is someone trying to tell me something?? Hmmmm....

On a different note, tomorrow, March 10th, we receive the results of Ed's CT scan that was done on Monday. I'll try to post an update as soon as possible to keep you all posted.

March 5th is Dress in Blue Day

Help us raise awareness about colorectal cancer and the importance of screening by wearing blue on national Dress in Blue Day! It is celebrated on the first Friday of March so this year it's on March 5th.

• Colorectal cancer is the #2 cause of cancer death in the U.S.
• Over 150,000 Americans will be diagnosed with colorectal cancer each year.
• Colorectal cancer often has no symptom at all until it's at an advanced stage.
• Colorectal cancer is 80% preventable when detected early.
• You can reduce your risk through regular screening.
• Beginning at age 50 (or earlier if you have a family history), everyone should be screened for colorectal cancer.

March is National Colorectal Cancer Awareness Month. Spread the word!

Chemo Treatment #6

This past Tuesday, February 23rd, was chemo treatment #6. Ed is still doing well and not having any serious side effects. He has had some pain in his right leg so Dr. Bowers did want to have this checked out. There were three possibilities--(1) a strain, (2) a baker's cyst, or (3) a blood clot. Since clotting can be a side effect of the Avastin, Dr. Bowers wanted to rule that out. He was very doubtful, but needed to be diligent and at least check. So after the chemo treatment, we headed downstairs to the lab to have a Doppler ultrasound done on Ed's leg. We waited while the radiologist reviewed the results with Dr. Bowers so they could do additional tests while we were there if needed. It was, thankfully, not needed. The doppler was clear! Glad to have that ruled out! So rest and heat was ordered to relieve the pain.

The infusion itself, though, we pretty routine. Saw Augie and some of the other regulars that we are getting to know and learn their stories. They are all fighters and I give them all a lot of credit. Many are going through more frequent treatments and radiation and we realize how lucky we are that Ed is responding so well with few, if any, side effects. We are blessed.

Although it does seem strange because, with the exception of biweekly chemo treatments and pills on the kitchen counter, things are not much different around here. Sometimes it doesn't seem real..."are you sure he has cancer?"...because we say the word, we go to treatments, Ed takes his prescriptions, but it doesn't seem real most of the time. And I'm reminded to be thankful about that.

Other good news is that both Ed and I have finally gotten our passports. So now we can seriously look into booking flights to Italy. Our plan is to schedule a trip between treatments while Ed is feeling good. I mean, who knows where we'll be in a few months...look where we were 2 months ago.

March 8th, Ed gets a CT scan and on March 10th we meet with Dr. Bowers to review the results (and also for Ed's next treatment). It will be good to see what this shows and what Dr. Bowers has to say about it. So keep us in your thoughts that day and I'll be sure to update you on the results soon thereafter!

May you all stay healthy and warm. Be sure to hug your loved ones today!!

{{HUGS}}

Chemo Treatment #5

At some point I will stop titling these entries with treatment numbers. At some point it will be difficult to keep track of exactly which number treatment we're on. It's like when you have a newborn child. At first you track their age in days and weeks (he/she is 7 days old...3 weeks old...), then it's months (8 months), half years (2 1/2 years old) and finally we just remember the year (7 yrs old, 20 years old).

Since we are "only" at treatment #5...it's clear we're still in the early stages of this battle. At some point we'll count months and, God willing, years.

But back to treatment #5--which was on Tuesday, February 9th. Once again it was "routine". Got there in the morning for blood work, then met with Dr. Bowers. Ed has finally gained some weight! The scale was up 4 lbs...haven't seen any weight gain in months. So that was good to see. His blood pressure continues to be slightly elevated. This can be a side effect of the Avastin so we will monitor this.

Dr. Bowers said the blood count looks good. His external measurements of the liver continue to show that it is shrinking. On December 15th, he measured 14 x 15; today he measured 4 x 10. What this means is that it appears the chemo is shrinking the tumors.

A CT scan has been scheduled for 3/8 with a follow-up appointment with Dr. Bowers on 3/10. This will give Dr. Bowers a look at the tumors in the colon, liver, and the lump they had previously seen outside the esophagus. Hopefully all the tumors are shrinking and the CT scan will enable us to take a closer look at this.

Still no serious side effects--running nose, some achey, swollen feet/legs on occasion. But, thankfully, nothing serious. We did finally apply for our passports in case we decide to squeeze in a trip to Italy. In December, when we first received the news, we totally wrote it off and didn't even apply for our passports. But with the lack of any bad side effects, a trip may be possible. We'll see.

Speaking of Italy, Dan is doing well. I still nag him to update his blog. He has posted some photos on Facebook but for those of you not on Facebook, you can't see these. Last weekend he went skiing for the first time in Abetone, Italy and is hoping to go again. He just got done making his plans for spring break which will include Berlin and Barcelona. Oh, and somewhere in there he is attending class (I hope)!

Okay, now about that X on the back of the doors...I like to say it's for "Bang head here", but we asked Dr. B and for those of you who guessed it is for emergencies so they can indicate the room has been checked/cleared--are correct! Of course, Dr. B told me to get a life when we told him why we were asking and how we asked this question on our blog!! Told you we liked this guy!!

And, for those of you who have been waiting, I finally got some pictures of Augie, Dr. B's "therapy" dog. They aren't great pictures because I try to be subtle about taking the pictures, but you'll get an idea of how cute Augie is.

Here's Augie making his rounds greeting everyone in the waiting room.

Came over to visit Ed.

Visiting us in the Infusion Suite.

Coming to see if there are any treats in my bag.

Our next appointment is on February 23rd. We'll certainly try to keep you posted. Thankfully things are going very well so there's not much to report. But we're not complaining! May you have a Happy Valentine's Day!!

Chemo Treatment #4

This past Tuesday, January 26th, was Ed's 4th chemo treatment and it was all "normal". Nothing unusual, nothing different, . . . We are getting used to this routine. We arrive at Cooley around 8:30 for blood work, then meet with Dr. Bowers, then into the infusion suite for the chemo. The staff to Hampshire Hemotology are great--all very nice and helpful. We still think highly of Dr. Bowers and love his oncology nurses as well, in particular "the wonderful" Shayne. Augie was there to greet us again, I just haven't been able to get a picture of him yet.

Thankfully, I'm still able to join Ed for his treatments (because my supportive and understanding supervisor and employer!). Ed doesn't really need me there for the treatment. He reads the paper while I work on my laptop and afterwards he could definitely drive himself home. However, I like to be there when Ed meets with Dr. Bowers to be sure Ed shares all pertinent information and also to hear what Dr. Bowers has to say. This week there wasn't any new news. The chemo seems to be shrinking the tumors on the liver and Ed seems to be responding well (no signs of the cancer getting worse). So we'll continue with the treatment and probably have a CT scan done sometime in the next month (probably around the 6th treatment).

We are very thankful that Ed is having no serious side effects and is beginning to get his energy back. There are no further signs of hair loss. Ed still has occasional swelling in his feet/ankles. Dr. Bowers told him he should elevate his feet during the day (hmmm...where has he heard this before!?) (Grover feel free to yell at him if he doesn't do this while at work!)

Although Dan hasn't updated his blog, he did send me a quick email earlier this week and he seems to be doing well and keeping quite busy. Last weekend he went to Rome for an arch workshop. This weekend I think he's headed to Siena. He's also sharing a TA position with another student. Ed would still like to try to fit in a trip to Italy. Since he's responding so well to the chemo, we might actually entertain this now. We'll see.

I have to say it is a little weird to say Ed has cancer when he has been doing so well. I remember how awful it was when he got the initial diagnosis and now here we are not even 2 months later and he's doing so well that you wouldn't even know he has cancer by looking at him. That is a good thing--don't get me wrong! And it's easy to forget that cancer has entered our lives and so there are times when I'm waiting for the other shoe to drop. But for now, we'll live in the moment, and relish the fact that he is responding so well to the treatment and life can continue on fairly normal, at least for the time being.

So thanks for the continual good thoughts and prayers. We appreciate them all.

Waiting in the exam room for Dr. Bowers. Can you believe he actually smiled for me?

This yellow X appears on the back of the exam room doors. What do you think they are for? Note that these are the only doors in the room, so to indicate "exit" doesn't make sense. Any guesses?

On the back of the bathroom door as well. Post your guess and we'll ask Dr. Bowers at one of our upcoming appointments.

Quiet Days

Hi all! Things have been quiet around here which is really nice for a change. In case you haven't noticed there is a link to the right to Dan's blog. He posted some info about his first few days in Italy with some very nice pictures, but nothing recently. Classes started for him this past Monday (no Martin Luther King holiday in Italy!). This weekend he was off to Rome with two other classmates for some kind of architecture workshop. It's about bridging cultures and so each of them will team up with an Italian student and design something. The workshop ends on Saturday and they will stay until Sunday to do some sightseeing. What an experience! My weekend plans include laundry, cleaning, etc. Dan's include going to Rome! Isn't that what we're all doing this weekend??!

I'm sure once he's back, he'll post something on his blog--or at least I hope he does. From what I understand the Internet is not very good, at least not in their apartment, so he's having a hard time uploading pictures (or so he says!).

Things here at home are relatively quiet--thank God! Now that we've made it through the initial diagnosis, first few chemo appointments, made it through the holidays and getting Dan off to Italy safely, we are returning to some semblance of "normal". I'm back to work on a regular schedule just taking a few hours off to go to the chemo appointments with Ed every two weeks.

Ed has returned to work and works fairly full time. Things are slow this time of year and if there's not much work, he'll come home or not even go in--that's fairly typical during the winter. Earlier this week he had a stomach bug that lasted no more than 24 hours, so we know it was either a bug or something he ate, not anything to do with the chemo.

The one side effect we continue to try to manage is swelling of his ankles/feet and soreness in his feet. After evaluating when this happens, we're pretty sure it's linked to when he is on his feet all day at work. I keep telling him he needs to take a break during the day and elevate his feet, but he'll only listen sometimes. He is being careful about staying ahead of the hand-foot syndrome that is a common side effect of the Xeloda and can result in very dry, blistered, and painful hands and feet. There are three stages of this and some people can't even walk because it is so painful. So he is sure to lather up his hands and feet to keep the skin moisturized which is the secret to staying ahead of this.

Other than that, we are doing well and Ed is looking good. He said a couple weeks ago that he was beginning to lose his hair, but I have not noticed this. I mean it is thinner, but no bald spots yet (and doesn't thinning just come with age!). He is also getting his energy back. So except for the myriad of pill bottles on the counter, the occasional swollen ankles, and his weight loss, you would not know there is this cancer inside his body that he is battling.

So I'm thankful, and I know he is as well, that this journey so far has not been as difficult as I know it can be. I am thankful that our lives have returned to "boring" and that my weekends can be putzing around the house, doing chores, and taking life a little slower right now.

We thank all of you for your prayers because I know this makes a difference. The docs give us the medical treatment, but I am convinced that determination, hope, and prayers is the other part of this battle...and miracles as well. So keep the prayers coming and thank you for your continual love and support.

Next chemo appointment: Tuesday, 1/26. Hoping for continual good news and another "quiet" day.

Chemo Treatment #3

Our regular, biweekly hangout. Their "therapy dog" is Augie.
I'll need to try to get a picture of him at our next visit.

After getting Dan off to Italy on Tuesday, Ed had his 3rd chemo treatment on Wednesday. The report from Dr. Bowers is that things are looking good. His blood tests are looking good (numbers are moving in the right direction) and it appears the liver has continued to shrink. He's quite happy with Ed's response to the treatment. He considered doing another CT scan but both him and Ed agreed they could wait a couple more sessions (not me...I want to look NOW...but I figured I'd give Ed this decision to make!).

They used Ed's port for the treatment and the nurse (the wonderful Shayne) said the port area looked very good considering he just had it done last week. Kudos to Dr. O'Brien on doing such a good job!


There were two women receiving their first treatments while we were there and Dr. Bowers recommended they both get the port. So here was Ed, one week after getting his port, sharing info about the surgery and showing his port to them. We laughed about how he is already the veteran and it was only his 3rd visit! Of course as I type this I realize how sad it really is how quickly new cancer patients arrive and Ed is no longer the newbie.

The treatment was uneventful. Ed read his paper, I did work on my laptop. So far still no serious side effects but I'm watching and waiting carefully. Dr. Bowers keeps saying he'll be fine; others have said it's worse after the second or third treatment. Time will tell.

Minor side effects are dry skin--partly from the dry air/winter, but partly due to the chemo; thinning hair; and some slight swelling in his legs. He hasn't had any swelling the last couple weeks so I attribute this to the fact that he worked all day today and probably was on his feet longer than he should have been. But these are all minor things that we can deal with.

On another note, we did hear from Dan (a quick email) to let us know he arrived in Italy and so did his luggage. They've got him busy right now with orientation so he really didn't have much time to write yet but he's hoping to share pics in the next few days.

And for all of you who keep asking how you can help, be careful...I might ask you to try to figure out all the medicine bills and insurance claims! It is crazy and I'm an organized, detailed person. But trying to make sense of the bills and tie them up to claims, etc., is nuts. This is what I tried to do after work tonight.

So thankfully not too much report. Below are some pictures that Ed allowed me to take.

You can see the port here.

IV inserted into the port.

All "wired" up.

In his "usual" chair in the infusion suite.
Of course, he's usually reclined, sitting back with his feet up.

And He's Off...

Today was the big day...the day Dan left for Florence, Italy for four months (note my countdown clock below on the right!). He was flying out of Logan. I've never been there but have heard nothing but horror stories about trying to get in and out of there. For days we've been considering using Logan Express--we would drop Dan off in Framingham and he would take the shuttle bus into Logan. We would avoid all the hassles and cost of driving into Logan, but it also meant saying good-bye in Framingham vs. the airport.

Well, this morning we decided to drive to Logan. It's an estimated 2 hour drive and we were planning to leave at 11 anyhow, so this gave us an hour+ buffer to deal with whatever traffic issues we might encounter. (Dan's flight was at 4:30 so we wanted to be at the airport by 2-2:30.)

We hit the road shortly after 11. In fact we were ready early since Dan had done most of his packing on Sunday. So this morning was just double checking the list that we had already triple checked.

We stopped for gas before leaving town and off we went arriving at Logan at......12:50 PM! Yes, less than 2 hours later we were at the airport. There was no traffic at all. The most confusing part was following the signs once we were at Logan, but thankfully I had checked it out beforehand so had an idea of the layout and where I wanted to park. Really, the only confusing part was when Ed was at a V in the road and Dan yelled at him to go left and I yelled to go right (right was the way to go).

There were NO crowds at all. In fact, the entire terminal was pretty much empty except for a short line at Lufthansa (full of RWU students checking in!). Since Dan checked in online the night before, he was able to bypass the long line and just walk right up to the counter (no waiting) to check his bags. So that took an entire 5 mins of our time!

We took advantage of the time we had and enjoyed a light, leisurely lunch together. Around 2:15-2:30, Dan went through security. Once he got through security he turned around and waved good-bye before heading to his gate (it still makes me smile that he thought to do this--made my day). Ed and I then made the drive back home. Soon after we got home (around 4:30) we rec'd a txt message from Dan that he was on the plane and they were about to take off. (Another smile for texting Mom.)

I have to say we are quite happy with our decision to bring Dan to Logan. It was definitely the right thing to do and the fact that we ran into no problems helped as well. Of course we laughed about the cost of this little adventure--parking at Logan was $12, and lunch was $35, plus the cost of the tolls! So the Logan Express would have been MUCH cheaper ($22 for a round trip ticket), but this was soooo worth it and the right decision.

Ed continues to feel well and did all the driving today. Tomorrow morning is his next chemo appt so hopefully he'll continue to have no serious side effects from that. Only time will tell but I'll be sure to update you.

Phew...what a month it has been! I hope the next 4 months are boring!

A blurry picture of the three of us that some nice gentleman offered to take...

Port Implant

Happy New Year!
Well we rang in the New Year hanging at home watching TV and playing Wii with Dan and his girlfriend, Cassie who came to visit for the weekend. Ed still does not have any serious side effects from the chemo so we are thankful for that (knock on wood!).

Today was Ed's surgery for a portacath. Here's a couple pictures of what a portacath looks like...


And how it is used...

These aren't great pictures, but you can Google "portacath" if you want more information. But basically, this will allow IVs to be given via this port instead of through a vein in Ed's hand/arm. And with regular chemo, this "saves" your veins and you don't need to worry about your veins collapsing. An added bonus is that this can be used to insert dye if you need a CT scan, etc.

Ed's surgery for the port implant was scheduled for today at 2 PM with us needing to arrive at the Kittredge Surgery Center at Cooley Dickinson at 12:30. However, Ed got a call yesterday and he was rescheduled to earlier in the day (which he wanted) to 7:30 AM. Now that doesn't sound so bad except we needed to be there at 6:15 which meant we needed to leave the house by 5:45 at the latest!! Yes, 5:45 AM!! So I was up at 4:45! Oh well, I guess I can function on a few hours of sleep!! I am thankful that we had less than a half hour drive (at least it's less than a half hour at 5:45 in the morning!)! And I guess, now that I think about it, we certainly didn't have to worry about things running late!

Now I'm very lucky to be able to say I've never had to use the Kittredge Surgery Center, but I can tell you I was QUITE impressed with not only the beautiful place, but the staff there were incredible as well. From the warm, welcoming gentleman at check-in, Ed's nurse Gail, his surgery nurse (sorry, can't remember her name), his anesthesiologist (Dr. Goswami), the two "girls" (Kate and Heather) who took his chest x-ray, and, of course, Dr. O'Brien--they were all so warm, friendly, patient and took the time to explain things and be sure we didn't have any questions and even took the time to joke and laugh. When I was first sitting in the waiting area I was impressed by the beautiful space and how welcoming and comfortable the waiting area was, but by the end of our visit, I was also very impressed with all the staff working there. What a wonderful team!

And they were quite efficient! Surgery was scheduled for 7:30 and at 7:30 on the nose they wheeled Ed into the operating room. They have this very cool, large screen "SmarTrack Family Board" in the waiting room where you can monitor a patient's progress. So at 7:30 the board indicated "Ready for Surgery". By 7:40, status had already moved from "In OR" to "OP in progress" and by 7:45 the status was "closing". Less than 5 minutes later, Dr. O'Brien was standing next to me in the waiting room to let me know everything was done and I could go back to see Ed in recovery! Heck, I didn't even have a chance to even begin going through the work I brought with me to read through!

We then spent the next hour in recovery, monitoring his vitals, getting instructions, etc., and we left around 9:15 and he rested/slept most of the day. He's a little achey, especially his left arm and shoulder since the port was inserted in the upper, left side of his chest. So recovery is to take it easy, tomorrow remove the bandage and shower, watch for infection, and next week Dr. Bower's office can use the port for the chemo! Just like that!

I have to say I'm relieved. This was another major event/milestone on the calendar and I know I was fretting about it (although I wouldn't tell Ed that). I mean it's surgery--sure minor surgery--but still. I'm relieved that the surgery went well and that the whole experience was as positive as it was. Who knew? I guess so far we've been so lucky to have encountered all the great doctors, nurses, and staff that we have. Maybe all the good ones do outnumber the rotten apples that you tend to hear more about.

Next on my calendar...getting Dan off to Italy on Tuesday, then Ed's next chemo appt on Wednesday using the port. And then I think life returns to our new "normal" (whatever that might be). But the last month has been a whirlwind--from the colonoscopy (can you believe that was just a month ago?), to the diagnosis, to the first chemo treatment, to Christmas, to more chemo, to New Years and now to this surgery! Phew! It's hard to believe it's only been a month.

So now, I just need to focus on making sure Dan is all set to leave for Italy next Tuesday. Then I'm hoping we can settle into a new, less stressful routine with "just" chemo every two weeks. I would never had thought 4 weeks ago that "just" having biweekly chemo would be less stressful. Who knew? But I am thankful that this is all we need to worry about at this point and I hope and pray it continues to be this "boring".

Happy New Year and may 2010 be a safe and healthy new year to all of you who are supporting us on this journey. Know how much your good thoughts and prayers mean to us!

Here's Ed wondering why in the world I've got my cell phone out (because I didn't bring my digital camera, of course!)

I even got him to smile for this one!
There must have been something good in that IV they were giving him!!

2nd Chemo Treatment

Today was chemo treatment #2. Dr. Bowers was quite pleased to hear that Ed has had no serious side effects from the chemo (no nausea or diarrhea). Of course, we have heard that it gets worse after the 2nd or 3rd treatment, but Dr. Bowers says he thinks Ed will be fine. If he doesn't have any bad side effects yet, he won't. I guess time will tell who's right! I'm putting my money with Dr. Bowers--he's a smart man (in my honest opinion)!

The good news is that it appears Ed's liver has shrunk. From an external measurement, Dr. Bowers measured 10 cm down from 14 cm two weeks ago. This is very good news that after one treatment, we seem to be seeing a response. Yeah!

For today's chemotherapy, though, Ed only got the Irinotecan and no Avastin. Avastin can cause bleeding and since he has surgery next week for the port, we skipped the Avastin this week. Dr. Bowers did offer an alternative that Ed is genetically eligible for--Cetuximab. The downside with this agent is development of a rash. We both agreed (us and Dr. Bowers) that since the Avastin seems to working well, we wouldn't switch at this point and save the use for Cetuximab if we need it. Skipping Avastin for this round would be okay.

Ed will start the next round of Xeloda tomorrow as well. We continue to monitor and manage the minimal side effects he's dealing with. As Ed even pointed out, every little ache, pain, twinge is magnified right now so we try to monitor and manage each accordingly.

Today I asked Dr. Bowers about CEA counts--I come across this alot when reading about colon cancer online. It stands for Carcinoembryonic Antigen. CEA is a protein found in many types of cancer cells. A rising CEA may indicate a cancer is growing while a falling CEA may suggest a cancer is responding to treatment. Notice the "may"--it "may indicate" this or that. It doesn't always tell the full story but it's one piece of information. Right now, because Dr. Bowers can evaluate the size of the liver externally, he doesn't check CEA count every visit, but will do so further into the treatment. He did indicate that Ed's CEA count initially was over 300. If you read anything about this, "normal" is something 0-3 or 0-5. So I'm hoping when Dr. Bowers does future testing, this number will go down. And anyone who knows me, knows I need these numbers--something tangible and measurable. This is why I had to see the CT scan for myself as well. That's my job, though, right?

So life continues to march on and we continue to move forward looking forward to ringing in the new year with Dan and his girlfriend, Cassie. Next week on Tuesday we have the port surgery and the following week we have our next chemo session (every 2 weeks).

I thank everyone for your ongoing support and prayers. Please keep the prayers coming.

Merry Christmas

Wow! Christmas! So much to do to get ready and on top of it all, we now have this "cancer" to deal with. Very inconvenient--that's for sure! And, of course, I'm trying to keep all the balls in the air. People tell me not to try to do everything, that it's understandable, but me, the perfectionist, doesn't know how to cut back. So I didn't cut back and I'm trying to squeeze in all the usual things and parties.

I did have a great "reunion" with 6 gals from high school. We reconnected via Facebook and although I could pull (what I call) "the cancer card" as an excuse not to go, I went and had a great time (and Ed and Dan survived without me being home for a few hours!). We had Christmas Eve with Ed's family and Christmas Day with my family. Both gatherings were very nice and it was truly nice to spend time with family and friends. It was tiring though and Ed spent most of Saturday and Sunday sitting in his recliner with his legs elevated due to swelling in his calves and ankles.

Our focus now is getting Dan ready for Italy (he leaves 1/12) and his girlfriend is coming to visit for New Years (she's from Long Island). So we'll have a houseguest for a few days. I'm hoping once all holiday activities are over and once Dan is off to Italy (not that I want to rush him away!), life will be less hectic. We'll see...

Meeting with Surgeon

Ed and I met with a surgeon, Dr. Tim O'Brien, today. The primary purpose was to schedule surgery to have a port implanted. Ed had no doubt that he wanted to have this and he wanted this done sooner rather than later. I guess he didn't like the idea of his veins possibly collapsing from the IVs. So surgery for this was scheduled for Jan 5th.

Dr. O'Brien will also be Ed's surgeon is surgery is needed in the future. He said that if there was any blockage in the colon due to the tumor to call him immediately (vs. running to the ER) because he would know what needed to be done (which would be a colostomy--but Ed doesn't want this--but we'll cross this bridge when we get there).

We joked as we were driving home that in less than a month Ed now has a gastroenterologist, an oncologist, and a surgeon in his repertoire of doctors.

1st Chemo Treatment

Well, we made it through the first chemo session. We got to Hampshire Hemotology Oncology (HHO for short) at 7:45 am where they took some blood and then we waited an hour (so they could run the blood tests).

Met with Dr. Bowers who went over the treatment plan, checked Ed and also told us that they found a lump outside Ed's esophagus. However, we're not doing anything about that right now because to bioposy that right now would be traumatic for his body. They are quite sure it's related and since we're doing the chemo, waiting to look at that won't hurt anything. I was impressed with the fact that it was Dr. Bowers and his "team" that were reviewing Ed's scans last Thursday and identified and discussed this lump.

We asked to see the CT scan and Dr. Bowers showed us the tumors on Ed's liver--quite a number of them and some of them are a good size (1-2" in size). Seeing the CT scan was pretty cool--seeing what we were facing explained why Ed's liver is so oversized. As far as if/when we can tell if the chemo is shrinking the tumors, Dr. Bowers said he will be able to easily tell just by an external exam because the liver is so oversized right now (and we all though Ed just had a beer belly!!).

We then went into the "chemo suite" and Ed got his pick of chairs since he was the first one there. The folks here are great and the oncology nurse we love. They had a stocked frig, snacks, blankets, DVDs, music, etc., whatever you need. They also have a "therapy dog" that happens to be Dr Bowers dog. A great, small dog that walks around quietly greeting the patients.
So we started ("we"...like Dan and I did anything!) with a shot of benadryl followed by an iv of a pre-med (Aloxi) to help with nausea. Next was an IV with the Irinotecan followed by an iv of Avastin.

It all was pretty uneventful...in fact, being there was quite boring! Told Ed we'd have to come up with something if we're doing this every 2 weeks--reading, cards, knitting!! Lol
We left there at 12:30 and stopped for lunch and then went to Best Buy and CVS. Needed to get a prescription for nausea (in case Ed has that side effect), immodium a-d (diarrhea is a possible side effect of the Avastin) and then B6 (for the Xeloda that Ed needs to start taking tomorrow) and vitamin C to help his body absorb the iron pills he's taking!

Tomorrow morning he begins the Xeloda regimen--4 pills in the morning w/breakfast and 4 pills at nite with dinner for 7 days. Then 7 days off and repeat. So every 2 weeks we've got the two IVs and the pills with one week off in between.

This Friday we have a meeting with a surgeon to (1) have the surgeon get to know Ed (because if we can shrink these darn tumors surgery in the future is possible) and (2) schedule implanting a port. Amazing how common a port is...of the 5 other folks who came into the "chemo suite" while we were there, all but 1 had the port. I personally never knew about this but now I do and one of the first guys we met in the "chemo suite" offered to show us his port (well, Dr Bowers asked if he would). And this guy highly recommended his surgeon who is the same surgeon we're seeing Friday. The idea of the port though is to get the ivs through the port vs your veins because after a couple treatments of chemo, your veins take a beating and can collapse.

His next chemo treatment will be in 2 weeks. It's not scheduled yet, but they'll be calling to get us scheduled. Good news is they have wifi there so I'll love that (Dan was on his laptop most of the time we were there).

So the beat goes on...right now everything seems "normal", but we're prepared for the onset of possible side effects (got our pile of pills!).

Thanks for your thoughts and prayers. Keep them coming!

Telling Family and Friends

This was one of the hardest things to do. How do you just bring this up in casual conversation? We decided we would not tell Dan until he came home on Sunday. What difference would waiting a couple more days make and this way he could enjoy his last few days at school and we could tell him face-to-face.

On Saturday I would see my sister Cathy to borrow her van and I thought about telling her. However, it didn't feel right, so I didn't. The kids were there, they were doing crafts for Xmas, having a good time...just not the right time.

I then stopped at my mother's to give her her birthday present (her birthday was the day before). I needed to tell her. So I sat there patiently and made small talk while she was making meatballs and then while she opened her gifts. And then I let her know. Can you picture it? Yadda, yadda...small talk...yadda, yadda...happy birthday...yadda, yadda...Ed has stage iv colon cancer.

God I hated ruining her day. It was 4 days after the 20th anniversary of my dad's passing and the day after her birthday. How to ruin her week even further. I kept apologizing for ruining her day. This was ruining everyone's day. My brother was there so I told him as well. My mother offered to tell my sisters and I so appreciated that.

Somehow I got through the rest of the day and Ed and I drove to Bristol on Sunday to packup Dan (since he's going to Italy next semester). We pretended nothing was wrong and no one noticed that I wouldn't let Ed carry any heavy stuff. After we got home, we sat on the couch with Dan. Again, how do you just bring this up in casual conversation? We did though and once the words were out we talked openly.

Of course, we told Dan we still want him to go to Italy. Unfortunately, we would not be going to visit him though (damn cancer). The chemo plan is to receive chemo every 2 weeks for the next 6 months. That would put a bit of a damper on our plans to visit Dan. But we didn't want Dan NOT to go. I did talk with Dan about worse case and he could be home in 2 days if needed--but we weren't going to need this. We were going to stay positive and fight this.

On Monday evening, Ed called his sister Mary to let her know. We wanted to be sure both families knew before the first chemo treatment and before we saw everyone at Christmas. She thankfully agreed to tell the rest of the family. I can't tell you how much of a gift this is for someone to offer to tell others. That so far has been the hardest part of all of this.

Dr. Bowers was clear--Ed can't be cured. But we can shrink the tumors and extend his life and that's what we're trying to do. And although I can become quite sad and upset when I think that Ed and I most likely won't grow old together and if we have 2 more years together we'll be lucky, I do believe in miracles and know that there are people out there beating this awful disease every day. And I also know that any one of us can be taken from this world at any moment. That just because I am not diagnosed with cancer doesn't mean I won't die tomorrow. None of us know when our time on this earth will come to an end and so given this cancer diagnosis just makes us feel much more vulnerable.

Many of my friends from church (including the entire choir which I'm a part of) has been told which is important to me because I know prayer is a powerful thing and we need all the prayers we can possibly get. I know how important a positive attitude and faith and prayers are in battling this awful disease and we appreciate the outpouring of love, support, and prayers our family and friends have been offering. That is why, as difficult as it is, I understand how important is it to tell others.

First Meeting with the Oncologist

Oncologist....we were meeting with an "oncologist". Hampshire Hemotology Oncology (HHO) is located in Cooley Dickinson Hospital. It's a long walk from the entrance, up the stairs, down the hallways, to HHO. Follow the signs..."oncology". As we entered their office, it hit me that we were in the "cancer" ward....everyone there is diagnosed with cancer. We have become part of that group. We crossed the threshold.

Our meeting was later in the day and Dr. Bowers told us straight up: "it's cancer", "it's bad", "surgery and radiation is not an option right now"--it would delay chemo and we needed to try to shrink the tumors, "spread to lymph nodes", "spread to the liver"... There it was...

I had done enough reading to put this all together--Stage IV colon cancer, spread to the liver, uncurable, life expectancy of 5 years--low percentage, maybe 2 years if we're lucky...

We asked questions, Dr. Bowers answered them patiently and thoroughly. He described his recommended chemotherapy plan. He wrote it all down for us. As Marty told us "trust your instincts". We liked Dr. Bowers. We felt good about him. He spent a lot of time with us and explained things and answered our questions.

I asked about getting a second opinion. He was concerned about the time this would take. Besides, his reason for not doing surgery first made sense to me and what was as second opinion going to tell us--that Ed didn't have cancer--NOT! If we did nothing, Ed was looking at 1-2 months. That made it pretty clear how "bad" this was. He told us to think about it and give him a call back. He wanted to start chemo the following week.

Oh, and to top things off...Ed is slightly anemic...that is why he has been so tired and has had no energy. So Dr. Bowers immediately put him on iron pills and vitamin C (helps with absorption of the iron). Of course, I don't know why his primary care physician couldn't diagnose this problem--but again, I'm not going there. No sense in wasting energy getting angry at why his primary physician didn't do more. Instead I'm just thankful that we didn't waste anymore than 3-4 weeks waiting on him. If we took his advice Ed would have been dead before he diagnosed anything. Thanking God that we trusted our instincts right away.

So we left there, stopping to get another chest x-ray on our way out for Dr. Bowers, and went out to dinner at Chili's. Talked about how we were going to tell Dan, next steps, what were we going to do. We were going to give this our best shot. We were going to fight this because what other option do we have?

Endoscopy and Colonoscopy

Both of these were scheduled for Thursday, December 3rd with Dr. Berkman.

Unfortunately I was in Florida on business so Ed had to deal with the dreaded pre-meds by himself on Wednesday. What was worse was that it made him sick and I was in Tallahassee and couldn't help him at all. To make matters worse, there were severe storms in Florida that delayed our flight. As a result, we missed our connection in Charlotte and ended up having to spend the night in Charlotte. As if things weren't already bad enough with Ed's appointment, here I was trying to get back from Florida so I could be there for him.

Thankfully our flight arrived in Bradley at 9:30 Thursday morning and I was back in Amherst by 10:30--an hour before Ed's appointment!

After the procedure, Dr. Berkman gave us the dreaded news. Even without getting the results of the biopsies he was confident the tumors were cancerous. The tumor in Ed's colon was so large that he could not get past it to check the entire colon. Reviewing the CT scan he would suspect that the cancer had spread to the liver but the oncologist could confirm this for us. He immediately got us an appt with Dr. Bowers in Northampton for the following Wednesday. He was also concerned about the tumor causing blockage and Ed requiring emergency surgery, so he wanted to be sure we moved quickly.

There is was...the dreaded word..."cancer". At some level, we were afraid that was going to be the diagnosis, but we were hoping for some miracle. Our miracle that day, though, came instead in Marty A. Marty is a nurse for the specialized procedure dept at Valley Medical were Dr. Berkman performed the procedure. Although Marty was not Ed's nurse that day, she saw Ed had come in and came to see me in the waiting room and also kept an eye on Ed during the procedure.

Marty is also the wife of someone I work with at ES, so we've known each other for many years. Marty also has always seemed to be there whenever Ed showed up at Valley Medical--his burns, his bruised ribs, etc. She always takes good care of Ed and once again was there for us. She sat with us after Dr. Berkman shared the news and re-reviewed with us what Dr. Berkman shared with us. A cancer survivor herself, she also talked to us about how to move forward and next steps.

Marty is truly an angel on earth and although the news was shocking and we were overwhelmed by it all, it was comforting to know she was available to us if/when we had questions and concerns as we tried to figure this all out.

So we got our endoscopy and colonoscopy. Next step, meeting with Dr. Bowers on 12/9. Is this really happening? Maybe it won't be as bad as we're expecting.