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...