Thoughts about life with cancer

Today, I returned to the Cancer Center for the first time since October for a followup visit, which consisted of blood work, CT scan, and a chat with the doctor. My blood work is good, CT scan is clean, and my oncologist is pregnant. That’s the news of today.

And in 3 months, I will return and repeat, with a different oncologist.

And then 3 months later.

And 3 months after that. And it will be the same thing next year. And the year after that.

You get the picture.

Back in 2009, I wrote on this same blog:

“This is my 13th year of L.W.C. (Life With Cancer). I am officially cured of the Hodgkins Disease that I was diagnosed with in February 1996, when I was 22 years old. I call it LWC because, once you have cancer, it never leaves your life.”

Life With Cancer. Many people have been excited that I was ‘all done’ (their words) with treatments. Yes, that is functionally true. And my scans are clear. True. But let me tell you, I don’t live a day where having cancer does not affect my life, either because it has forged some amazing friendships, because it slowed me down physically and cognitively, or because it gives me pause every day in thinking about the future. We just went through a year of question marks and uncertainty, and I don’t feel like that has left my life. While I have slowly started to make plans for things later this year, like riding the Pan Mass Challenge (donate at http://www.pmc.org/as0171) in August, I am very tentative about confirming anything that happens after April 16th, when my next scan is. Who knows what might happen on that day? This is one example of what living with cancer is like.

My body has twice shown that it is incapable of suppressing the development of Hodgkins lymphoma cells. The odds of it happening once were slim. Then a second time after 15 years, that was very rare. Who knows what can happen next?

Frankly, it is not likely that my next scan with show anything. But with each followup, the farther away from chemo I am, the greater the chance a bell for round 3 rings.

Do I think that I will have to fight round 3? No.

Will I if it happens? Yes.

Do I live my life with it in the back of my mind every day that there is the slightest of possibilities that it could happen? Yes.

But the fact of the matter is that I wake up every morning and have to live my life. A life with cancer. But also a life with Michele and Shannon, and, happily, friends and family. And those, dear reader, are my thoughts today, about life with cancer.

[side note: talk about life with cancer - it was 16 years ago this week when I first went to see a doctor about a lump in my neck. That lump was originally diagnosed as possibly being caused by an ear infection. After that turned out not to be true, I had a surgery and received my diagnosis of Hodgkins. But this journey, the life with cancer, started on a grey day in Rochester, NY 16 years ago.]

Tags: Cancer, Cancer survivor, Hodgkins Lymphoma, Pan-Mass Challenge

IT’S 2012 – Now it’s really time to beat cancer!

2012 – I am glad you are here. 

2011 was not a whole lot of fun for me and my family, being forced to tackle cancer head on and beat it again. When you get that diagnosis, like I did last March, about all you can do is put your head down and charge forward. No one says “hey, I want to beat cancer this year”. If you are lucky enough to do it, then you did what you had to do. It is really that simple. For me and many others, there was never another option.

The same is true about riding the PMC. Today, I registered for the 2012 Pan Mass Challenge! This year, I will be 10 months removed from my final chemo treatment, and as I write this in January, I have not been on my bicycle for 18 months. But, some way, I will be in Sturbridge ready to go. I have set the goal to again raise $7,000 in life-saving funds to aid cancer research at the Dana-Farber Cancer Institute in Boston.

Now here is the challenge for you! Donate. I guarantee you that I am not the only person that you will meet in your lifetime that has had cancer. And through the PMC and our efforts to make cancer history, more of the people in your life that are stricken will be cured. Make a donation and save lives. It is that simple.

Please continue to read my blog for updates on my recovery and updates on my training and fundraising efforts. I hope to see you soon.

Related articles

• 12 (andyridesagainstcancer.wordpress.com)
• Getting on the final roller coaster (andyridesagainstcancer.wordpress.com)
• Thanksgiving Weekend Update (andyridesagainstcancer.wordpress.com)
• What was that? It was us blowing past $250k raised (teamforzag.wordpress.com)

Tags: 2012 Ride, Cancer, PMC

Go Away, 2011

I think the first time I told Michele that I just wanted 2011 to be over, the calendar said June. Finally, I get to say, now and forever, ‘Goodbye and good riddance 2011″. If bad things truly do come in threes, you’ve had your full and complete run. Kudos to you. Now go on and get out of here.

Hello 2012. I am prepared to crush you if you start acting like 2011. Stay in line and we’ll get along just fine.

In Memory

A friend of mine died today. From cancer. He had been battling cancer for the last five years of his life. First it was colon cancer. Then prostate. The treatments, and there were many, never worked against his prostate cancer. In August, he told a group of us that he was not going to fight it any longer, but in fact, his doctor talked him into one more drug, one more treatment. That failed as well. It was about a month ago that he decided he was done. He was in pain and in constant need of units of blood, as the cancer was preventing his bone marrow from producing new blood cells. He set up hospice care to come watch him.

The last time I saw him was two weeks ago, at an awards ceremony. The award he received was “The Cross Pro Ecclesia et Pontifice” , the highest medal that can be awarded to the laity by the Pope. He was a teacher for his entire adult life, in fact, he taught his last class to his students via Skype 3 weeks ago. He was a man of great courage, humor, and compassion. The last couple of months, he knew the end was near, but he never talked of dying, he would just say that he was ‘going Home to God’. I was always struck by the sincerity and honesty in his voice when he said that.

My life is better for knowing you, JK. And I know that you are Home now.

Thanksgiving Weekend Update

To all my friends and family, I hope you had a peaceful and fun-filled Thanksgiving.

I wanted to take a moment, because I am starting to get a lot of questions from people, to explain where I am in my recovery. It is a tricky thing, this recovery period. What I have come to realize is that the chemo drugs did a quite a number on my brain and my cognitive ability. When I am surround by lots of distractions, I get overwhelmed and I am unable to think through what is happening. My brain gets fatigued and I have a difficult time concentrating and communicating.

Most of the time, I am at home, in a controlled environment where I can control the distractions. I have been learning techniques at occupational therapy sessions to pace myself through the day. I can typically handle one-on-one conversations without a problem. When I am in more social situations or in a new place, it is difficult to get through without some hiccups. It is by far the most challenging part of my recovery. My general physical state is good, my energy is up and the other side effects that the drugs inflicted are getting better or are gone. The trouble now is getting my brain to work right. What I have heard from other patients, the nurses, and the oncologists throughout the treatment process is that everyone reacts differently to chemo – obviously for me, the reaction was messed up the brain circuits.  There is no timetable of when this will recover fully.

My last chemo was given on September 27th. We consider the end of treatment to be two weeks later, when I finally did not have to go get chemo and most of the effects of the last chemo were gone. So it has been about 6 weeks since the chemo cycles completed. It seems as though things are going well, with the occasional cognitive frustrations described above. Turkey day was a tough one for me – a house full of people, lots of commotion, things not going right with the turkey fryer (missing parts, not enough oil, and running out of gas). My brain was just overwhelmed past the point where I could handle anything. It was so awful and so very frustrating. Eating Thanksgiving dinner in a dark room was not what I had envisioned. It was a reminder of the fact that I am ONLY 6 weeks post-chemo and that there is still a long way to go. And the fact of the matter is that you’d never know this if you looked at me.

By the way, the turkey turned out pretty well.

Now I would like to take a moment to offer thanks….

- to my family, for your immeasurable and unconditional support and help

- to my doctors, nurses, blood lab techs, cancer support group, acupuncturist, and OT/PT team, thank you for getting me through treatment and recovery

- to my Baltimore friends, for all the dinners, help with Shannon, and love to Michele and me

- to our many friends from Boston and beyond, for the gift cards, housecleaning support, and all the well-wishes

- to all the people who mailed cards or emailed, some of you weekly, for keeping me going

- to PMC Team Forza-G, for raising $289,000 this year for cancer research, and the entire Pan-Mass Challenge family, for raising $35 million in 2011 for the Dana-Farber Cancer Institute

- to Harpoon, for giving me peace of mind as I tackled my treatment and recovery

- to my dear friend Kathy, who has gone through cancer treatment herself this summer, for all her love, support, and understanding

- to our friend Jenn, who sacrificed a week of vacation to help us get through the dog days of summer, for being awesome

- to my daughter, for being the spark in my life

- and finally, to my wife, for always taking care of me, for understanding, for sacrificing, for her boundless energy and enthusiasm, and for being a great mom to our daughter throughout

Again, Happy Thanksgiving.

Tags: Cancer, Hodgkins Lymphoma, Oncology, Thanksgiving dinner

12

12 chemo treatments. 12 PMC Shirts.

When I started my second battle against cancer back in the spring, I made the decision that I wanted to have the PMC and everything that it means to me with me whenever I went in for treatments. It all started on April 26th, wearing my 2010 PMC Living Proof T-shirt. I felt that day that I was going from a cancer survivor, in PMC vocabulary, a ‘Living Proof’, back to a cancer patient. And it ended 5 months later, September 27th, with me proudly wearing a 2011 Living Proof t-shirt, sent to me by the PMC staff so I could wear it on this day. More than anything, I wish I could have been in Bourne on PMC weekend to get this shirt and meet the other PMC Living Proof at the annual photo. But it was not meant to be this year. I am honored to be part of this special group of people, PMC Living Proof, and can’t wait to get on the bike to start my training to get to Bourne for that photo next year.

Till then, enjoy the photos.

Treatment #1 - April 26, 2011. Living Proof 2010 T-shirt

Getting Ready for Treatment #2 - May 10, 2011. Living Proof 2009 T-shirt.

Treatment 3 - May 24, 2011. Living Proof 2008 T-shirt.

Waiting for Treatment #4 - June 7, 2011. Black PMC Performance 3oth anniversary shirt

waiting for chemo treatment #5 - June 21, 2011. Living Proof 2007 (from my 1st PMC)

Treatment 6 - July 5, 2011. PMC Polo.

Treatment #7 - July 19, 2011. 2011 PMC Commit Performance Shirt.

Treatment 8 - August 2, 2011. PMC 2011 Performance shirt. The very next day, we were heading up to Massachusetts to watch the 2011 PMC on Cape Cod. The red stuff in the syringe is Doxorubicin, one of the 4 chemo drugs I received.

Waiting for chemo treatment #9 - August 16, 2011. 2008 PMC T-shirt. Had to get stuck by 4 needles today.

A good view of my IV for treatment #10. It took 4 needles to get the IV that day.

Next to last chemo treatment, #11. Wearing an official 2011 PMC T-shirt for this one.

September 27, 2011 - Final chemo treatment #12. Living Proof again! This t-shirt is given to all PMC riders who are cancer survivors at the end of day 1 of the ride and worn during the annual Living Proof (aka Survivors) photo. I received my shirt a few weeks ago, thanks to the folks at the PMC, and wore it for the first time today, the day I stopped being a cancer patient and returned to being a cancer survivor.

Related articles

• Getting on the final roller coaster (andyridesagainstcancer.wordpress.com)
• What was that? It was us blowing past $250k raised (teamforzag.wordpress.com)

Getting on the final roller coaster

When I got diagnosed in late March/early April, this day was hard to imagine. And now that it is here, it seems a little bit anti-climatic. Perhaps it is because I just got chemo and I know that for the next two weeks, I will be riding the chemo roller coaster. My guess is that I will feel like there is some closure in 2 weeks, when I don’t go for chemo. In the meantime, I still have bloodwork, more scans and doctor’s appointments, restful days and sleepless nights, and acupuncture ahead.

What I do know is that I have been loved by my friends and family in the past six months. I have felt your love, received your prayers, enjoyed your brownies, fudge, meals, and other gifts, relished in your company, and be grateful and thankful for all of it. I have been think of all the kindness that you have bestowed upon us all day today. It has gotten me through. Thank you!

September 27, 2011 - Final chemo treatment. Living Proof again! This t-shirt is given to all PMC riders who are cancer survivors at the end of day 1 of the ride and worn during the annual Living Proof (aka Survivors) photo. I received my shirt a few weeks ago, thanks to the folks at the PMC, and wore it for the first time today, the day I stopped being a cancer patient and returned to being a cancer survivor.

There has been one person who has had a front row seat to this more than anyone else. My dear wife Michele. We have had a few good days and many bad days in the past six months. We are looking ahead now, trying to figure out what our new life is going to be life, what the ‘new normal’ for me will be, and hoping that we can have some normalcy back to our life. She has been amazing – taking care of me, being a wonderful mother to Shannon, and making a difference at her job every day. I am just in awe, while I was going through chemo, she has basically potty-trained Shannon (little more work left to do, but for a 23 month old, it seems like we are ahead of the curve). I could not have gotten through this summer without her and I am looking forward to giving her the chance, in a few weeks, to sleep in.

One final note, this week is your last chance to make a donation to the 2011 Pan Mass Challenge to benefit the Dana Farber Cancer Institute. Without the generosity of millions of people in the past, I would not be writing this note now. Please take a moment to make a donation, however large or small, to pay this forward and help save more lives.

Thank you!

Andy

Related articles

• It’s PMC Week (& Chemo #8) (andyridesagainstcancer.wordpress.com)
• Roller Coaster #10 (andyridesagainstcancer.wordpress.com)

Tags: Cancer, Cancer survivor, Dana–Farber Cancer Institute, Living Proof, Pan-Mass Challenge, PMC

Roller Coaster #10

A good view of my IV for treatment #10. It took 4 needles to get the IV that day.

It has been almost two weeks since chemo #10. Happily, that day at the cancer center was short. Since then, the roller coaster has been running on the same track as the previous treatments.  Spending entire days in bed. Waking up and feeling like that I need to take a nap. Routinely having to ask Michele what day it is, because they all seem the same and because I have little to no short term memory. Then, finally, after 9 days of low energy, poor brain power and comprehension, and general malaise, I again turned the corner and have had a couple of days where I felt ‘good’ or at least what I think feeling ‘good’ is now after 5 months of this.

Very soon, I will be sitting there again, on the day bed, mentally and physically getting prepared for #11. It is now September, the leaves are getting ready to turn, football is starting up, and I have been getting chemo every other Tuesday for 5 months. I am tired. I am bored. As I say pretty much every day, I just want to have a normal day.

A normal day – that is what it seemed like it was going to be 10 years ago. People were going about their business, going to work or school. I was headed out for a 9 AM interview with a headhunter. From the time I had left my friend’s house in Rochester, NY to the time I arrived at the interview, the landscape of the world we lived in had changed.

With all of the 9/11 memories coming back, I have been thinking about the summer of 2001 quite a bit. That summer, Michele and I got engaged and moved to North Carolina for her to start her masters program there. I had graduated from the University of Rochester with my MBA and left my job there after 6 years.

And, in what did not seem like it was a big deal at the time, I made it to and passed the 5-year cancer-free milestone from my first round of cancer. In what was a very busy time, that event, and being told by my oncologist that I was CURED of cancer, does not seem to have been as important as it should have been. Should I be so lucky as to make it to September 2016 without getting cancer again, I am not so sure that I will dismiss it so quickly. Certainly, I don’t believe that making it 5 years will mean that it won’t come back. I have just had the lymphoma return after 15 years, bucking all the odds and predictions. But, I will certainly be thankful in 5 years that I have had them to live, to share with my wife, to watch my daughter grow, to continue to raise awareness and money for the fight against cancer. That is what 5 years, heck, what each year, of my life going forward will be – a celebration of thanksgiving.

15 years ago – cancer, round 1.

10 years ago – ‘cured of cancer’/engaged/moved/September 11th.

While thinking back on those two times in my life, I am brought to remember another morning, in early September 2006, 5 years ago. That morning, the front page of the Boston Globe told the world that Jon Lester, at the time, a 22 year old Red Sox pitcher, had been diagnosed with non-Hodgkins Lymphoma. I remember that it was a Saturday morning, I was sitting at the kitchen table in our new Somerville condo, and I wept. Non-Hodgkins lymphoma, by all accounts, is a scarier kind of cancer to have than Hodgkins Lymphoma (what I have had twice). Jon Lester was 22 years old, the same age that I was in 1996 when I was diagnosed. I knew that Jon was going to have a tough road and you never know where that road is going to take you. Chemotherapy can save your live, but it does not always work. It also can have long term side effects. I was very sad for Jon for a long time. Then the news came back that he was responding to the chemo. Then, that he was done with chemo. Then, that he was building back his strength and was even going to come back to pitch in the 2007 season for the Sox. In fact, one of his first games back was the weekend of my first PMC ride.

Well, to run through the rest of the Lester story quickly – he did pitch in the 2007 season, including in the clinching game of the World Series. I cried some more watching Jon Lester, Cancer Survivor, holding the World Series trophy high over his head. Then, the following season, he pitched a no hitter. He has continued to have great success on the field, becoming one of the best starting pitchers in the game. About a year ago, Jon and his wife had a baby boy. And this month, Jon hit his 5-year cancer-free milestone. Obviously, I don’t know what he thought of reaching that day, or if the ’5-year’ mark has the same significance for a Non-Hodgkins survivor as it does for a Hodgkins survivor. But my father-in-law just mailed to me a full page ad that the LIVESTRONG Foundation had in the Boston Globe and I was struck by it. Again, there I was, looking at a picture of Jon Lester, crying, and thinking about fighting cancer.

What can I say, I hate cancer. I love cancer survivors.

The message in the ad, below, has a wonderful tone and makes a statement that I am continually try to make clear to all of my family, friends, colleagues, and supporters. I can’t beat cancer alone. It takes doctors and nurses and lab technicians, for certain. But it takes a much wider network of people, including you, to make it possible for me to do this. And I am so grateful. I hope that I never ever have to repay any of you with the same level of support and love that you have given me the last 5 months, because it will mean that one of you has cancer. But you should know, that I will be right there, among your family and friends, to offer you support and love, ready to do whatever and ready to fight like hell for you. I hope that day never comes.

This Tuesday will be chemo #11 out of 12. Another ride on the roller coaster begins.

Congrats Jon Lester on 5-years cancer free. May you stay that way!

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• Treatment #5 and The Steal (andyridesagainstcancer.wordpress.com)

Tags: 9/11 memories, Cancer, Cancer survivor, Hodgkins Lymphoma, Jon Lester, Oncology, Pan-Mass Challenge