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.

Thanksgiving

After meeting with Dr. Berkman on the Monday before Thanksgiving, we tried to remain positive. When we met with Dr. Berkman, my goal was to walk out of his office with an endoscopy and colonoscopy scheduled. It made sense that this was the next step--keep looking til you found the root cause of the problem. So at least we were moving forward. Can't believe Ed's primary care physician didn't schedule this--but we won't go there.

Dan was coming home Wednesday morning for Thanksgiving and we decided not to say anything to him about this unless he asked. First, because we didn't know what "this" was and second because he had just two weeks left of school which would be intense for him with his final studio project and finals--so why worry him when we didn't know yet what we were worrying about.

We were also prepared for possible questions from the family on Thanksgiving as well since they hadn't seen Ed since Halloween. My mother made a comment in August about Ed losing weight--would she say something again? If so, we would be honest--that we were seeing doctors and trying to figure it out. Thankfully, though, no one asked any questions and we went through the day and weekend as though nothing was wrong. It was a tiring weekend for Ed because one of his symptoms also was that he had no energy at all and had been spending a lot of time resting and taking naps. But he tried to mask this on Thanksgiving and throughout the weekend while Dan was home. He was pretty tired by the end of the weekend!

Dan left Sunday morning to go back to school. On Tuesday morning, I flew to Tallahassee, Florida on business. I would return late Wednesday evening just in time for Ed's endoscopy and colonoscopy on Thursday morning.

The Journey Begins

As a way to begin this blog, I'll give you a little background of the events from October to November...

In early October, Ed went to see his primary care physician. Ed had lost a lot of weight (about 20 lbs) since early summer and had a persistent cough. Now Ed is not one to go to the doctors unless it's an emergency. "Preventative care" are words that are not in his vocabulary. However, he was concerned enough to make the doctors appointment without any nagging from me. Although the weight loss concerned us, it was the persistent cough that had us more concerned. As I found out later, Ed also had some blood in his stools, but he hadn't told me that. Of course, if you google any of these symptoms on the Web you will get the long list of things that could be wrong.

Anyhow, the initial doctors appointment didn't seem to uncover much. Ed had some blood work done and his white blood count was slightly elevated but "nothing to be concerned about" (yes that is a direct quote). A chest x-ray was also taken to check his lungs (for the cough) and that didn't show anything either. We were told we'd do some more blood tests in another month.

Several weeks later, though, Ed wasn't feeling any better and I encouraged him to call his doctor back and be pushy. As you hear so many times, you need to take your health care into your own hands--you know your body better than anyone else--so he needed to be firm and let the doctor know things were not okay or normal.

So on November 16th Ed was back in his doctor's office. Ed was pretty adamant that if they couldn't figure out what was wrong, then what had they eliminated and what specialists should we see. Additional blood work was done, a urine test was done (which showed protein in the urine), a CT scan was scheduled, and we were referred to a gastroenterologist.

On Wednesday, November 18th, Ed and I headed to Cooley Dickinson Hospital for the CT scan and the next day his doctor called with the results (swollen liver, lump on the esophagus, narrowing of the lower colon and the possibility of cancer). Our appointment with the gastroenterologist was moved up to the following Monday.

By this point, Ed and I were afraid it might be cancer. Google the symptoms and that dreaded word kept popping up. But we tried to remain positive and on Monday, 11/23 we saw Dr. Berkman (Hampshire Gastroenterology) who scheduled Ed for an endoscopy and colonoscopy for the following Thursday. He actually would have liked to have done both procedures sooner but due to the Thanksgiving holiday, this was the earliest Ed could be scheduled.

And the journey begins...