Dan Lyons - One Last Note on His Peace and Love

Hello to all of the fans and followers of Dan Lyons' blog about his fight with Esophageal Cancer. This is Dan's oldest son, Joe.

For the few of you who may not be in the know, Dan's heroic struggle ended on July, 25th 2011.

To say that these past few weeks have been hard would be the understatement of the century. Mom, me and Dan, our wives and Dad's entire network of family and friends have been trying to figure out how we're supposed to go on without the spark that was my father in our lives. His presence was one we always appreciated, never took for granted, and is very sorely missed.

Mom has asked me to make one final post on Dad's blog. She wanted me to share with you folks the eulogy I said at Dad's funeral on July 29th. I'm going to post that first and then share a few final thoughts that I'm sure Dad would have wanted expressed on his blog below.

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Eulogy for Dan Lyons by Joe Lyons

First, I'd like to thank all of you for being here. The sheer number and quality of people that are here today to celebrate Dan's life and honor is passing is truly humbling to me and the rest of our family. I know that if Dad were here, he'd be speechless...for once. I know that he would have a kind word, a warm hug, and at least one fond memory of each and every one of you. He may not be here to say it himself, but I know in my heart how grateful he is.

A eulogy is a cruel thing to ask of a loved one. In a few brief moments, I have to do my best to some up the breadth of my father's entire life and for those of us who knew Dad, that's an impossible task. Though he was taken from us far too early, Dad crammed enough life into his years that would last the most of us until we were 145. Even in these last 2 years.

Two years. For two years, Dad conquered an obstacle that, on average, claims most within months of discovering it. Over these last 2 years, Dad really exemplified what it was to live. He took my Mom to Disneyworld...twice. He saw his two boys marry the loves of their lives. He did and said so much in the blessing that was these last two years that I don't know how I can ever live up to the standards he didn't know he was setting. Dan made sure that he touched as many people as he possibly could until it was time for him to leave us. Of course, it's not really enough for all of us, is it? We all got the gift of these last 2 years, but I think it's safe to say that, if we could, we'd demand 200 more.

So how do I properly eulogize my Dad? He was my loving and wonderful father, but he was so many things to so many people, beyond just being my Dad. Mom, he was your husband. He would have walked to the ends of the Earth for you, especially if he thought there was something with Jiminy Cricket on it to bring right back to you. You were his partner. You were his friend. And between the two of you, you made humanity's most handsome sons.

Dan, he was your Dad too. You were the Little Dan to his Big Dan and even though he's not here anymore, I'm sorry, but you'll continue to be Little Dan. He was always your coach and your friend. When he got sick, you were there for him and when you got sick, he was there for you. He was so proud of everything you accomplished and whill continue to be for ever and ever.

Dan was still more than that. Jim and John, he was your brother. No matter what, he was so proud to be your big brother and regardless of anything, he loved you so very much. Dan was a powerful friend. A brother-in-arms to the people that shared his passions. An uncle. A cousin. A son. A hopeless romantic. He was the guy all of the little kids loved to play with and he'd be the first to buy you a Guinness and listen to your stories. He was our inspiration and our pal. Our on-call tech support guy and our movie expert. A collector. An Irishman. A fan. And one terrific model American.

So I can't write one eulogy to cover all of us. It's impossible. He was too great and too much to too many. So, I want to say one thing on the one job I knew he would have loved at, but never got a chance to do. He was going to be a grandfather. I know how much Dad was looking forward to being a grandfather and it breaks my heart that he can't be with us phsyically when the time comes. And anyone in charge of the manufacture and sale of Notre Dame onesies has just lost a dramatic amount of money. Before he passed away, my wife and I got to his side in time to tell him the name of his grandson. I needed to share it with him before he went on his way and knowing him...he probably wasn't crazy about it. I can't tell all of you what the name is, since that's between me, Dad, and Sarah at the moment, but I do want to share with you the letter I wrote to my future son. In order to protect his identity, I will be referring to him as Dilbert. I promise you, that's not the name.

Dear Dilbert,

I lost my Dad today, so please put down the nunchucks or whatever it is you're doing in there and listen to the story I have to tell you. His name was Dan. Some people called him Dad, others called him Meatball, I called him Daddoo. You would have called him Grandpop. He knew who you were before you got here and he loved you so very much. Even when we didn't know if you were going to be a pirate or a princess, Dad immediately knew, you were going to be a pirate. He's also the one to blame for your father's upsettingly skinny wrists.

I'm so sorry that you never got to meet him. I wish that he could tell you his own stories, but now you're going to have to hear them from me for the rest of my life and I promise you I'll try to make them good. He grew up in Philadelphia. He had fantastic friends that stayed with him, even up until his last moments. He went on adventures. He even went to Woodstock, but I'll tell you those stories when you're much older. He met your Grandmom and he fell in love. He married her and loved her more and more every day for 37 years. He had two boys, your father and your Uncle Danny. He was a great Dad to have and I promise you I'll try to be just as good as he was. We played games and made snow forts. He would make pizza dogs for lunch when Mom wasn't home and showed us how to be funny. We watched thousands of movies together and I wouldn't trade any moment I got to spend with your Grandpop for anything. He got very sick, but even when things were at their worst, he always had a smile and a joke for anyone lucky enough to cross his path. He fought bravely and will always be remembered by everyone he knew. And now that he's gone, he's there looking over you now. God had a guardian angel already picked out for you, but I think it's safe to say that Grandpop is now on the job.

I promise to try to be as good a Dad as he was. I promise to tell you all about Grandpop whenever you want to hear about him and maybe you can help me grow up to be as good a man as he was. Now stop kicking your mother.

Love, Dad.

Once again, thank you all so much for being here. My family is forever indebted to the kindness you have shown us on this day. Dan will be greatly missed, but he's already put his thumbprint on all of our hearts and the only way can pay him back is to be as good to others as he was to us. I miss you so mcuh, Daddoo. Thank you so much for everything. You were my father, you were my teacher, but I'm so grateful and honored that you were also my friend. I love you.
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So now here we all are, in a world without Dan Lyons. This blog was a good bit of therapy for him, since it allowed him to write out the dangers and the treatments he was up against. I think seeing them in print made them easier to face. He always appreciated all of the comments and notes he got on this blog, because I know that any kind word would always lift his spirit and for that, I thank you all so much.

This blog was really a testament to Dan's bravery and fortitude. I don't know if I would ever be able to face the odds that Dad faced and display the courage, grace, and will that he did over these 2 years. Even after more than 30 years of being his son, he never stopped surprising me and giving me a new reason to look up to him.

Dad always ended his posts with this symbol:
I made this symbol for him on his request not long after he started his blog. And really, it sums up what Dan was all about. Ever the child of the 60s, Dad was proud of the peace and love that he experienced in his life and tried his best to spread peace and love wherever he could.

And really, there's no better way that we can all honor him. Live courageously like Dan and always have a heart filled with peace and love. Even though Dan's not here anymore, this is a battle that cancer has lost, because even though it claimed his life, it unleashed his spirit into all of our hearts and nothing, not even cancer, can ever put that out.

Thank you all so much for reading this and for all of the love and support you have given our family. When times are at their toughest, life has a funny way of showing you how much love that can be had.

On behalf of my mother, my brother, my family and myself; PEACE and LOVE.


I love you, Daddoo.

- Joe Lyons 08/22/2011

Update 5/25/2011

Well, it has been a while, so here goes.

I did have radiation for 28 weekdays in a row. That finished on 4/1/2011.
Since that time I have had CTscans and MRI's.
These have found a growth on the back of the brain, a growth around the muscles behind my right eye (always droopy) and a blood clot on my lung.

1. Growth in brain. I underwent Gamma Knife Surgery on 5/19/2011 to correct that. Results will not be certain for another month. They had to screw a mask into my head to hold the head still for the procedure (4 screws).

2. Growth behind right eye. I am currently undergoing radiation for ten days to correct this issue. Will know about success the same day we get results for the brain issue.

3. Blood clot on lung. To dissolve this, my bride gives me a needle in the stomach every morning. Not exactly sure how long this will continue. Might be for six months. If weren't for Patricia, the needle would not happen (I HATE NEEDLES).

Wish there was some more upbeat news to report - OH WAIT - Joe and Sarah are expecting our first grandchild in December. This is the GREATEST news we could have received lately.

Thank you and God Bless ALL.

Latest News 2/9/2011

I have met with Dr Jiang twice and my new Radiation Oncologist, Dr Mackley twice. I am going to have a 5 to 6 week treatment of radiation 5 days a week and new chemo drugs once a week to see if this combo can shrink the mass and stop the lymph nodes.
I have had a PTScan and another CTScan.
The latest CTScan was today to pinpoint where the radiation will be directed. While on the table, they used magic markers and tattoos to make the marks for the radiation. So at the young age of 60, I have tattoos. They are actually very small dots that can hardly be seen.

Radiation is tentatively going to start on 2/23/2011. Both oncologists are going to meet to ensure that the date fits into the new once a week chemo schedule.

THANKS for all of the thoughts and prayers - I CAN FEEL them.

Dan

CTScan on 12/22/10

We went to HMC on Wednesday and had a CTScan.
I talked to the head oncology nurse on Friday the 24th.
She informed us that the main mass in the esophagus showed no change but the lymph node by my spine showed some growth.
Unless she calls this week, we see the doctor on 1/12/11.

Hope everyone is enjoying this Holy season.

Love to ALL

Hershey Visit 12/15/10

Met with Dr. Jiang today. She canceled my chemo for 12/20/10 (much to my liking), is scheduling a CTScan and doesn't want (need) to see me for a month.
She also mentioned that my lymph node growths are "tiny".

All in all a GREAT visit.

Merry Christmas everyone and remember
Keep CHRIST in CHRISTmas.

Hershey 11/08/10

Had an abbreviated chemo treatment today. Dr. Jiang (Jen) canceled the 5fu drug because it seems to be having adverse prolonged side affects on my condition ( strength, stamina and breathing). She wasn't thrilled that I now weigh in at 166 lbs. If I don't pick up weight, I am not sure I agree with, she is thinking of implanting a stent in my esophagus in hopes I can eat easier. Other than that all seems to be going alright.
THANKS to ALL for prayers and thoughts. THEY DO HELP.


Dan

Week of October 11, 2010

On Monday the visiting nurse came to the house to replace the needle and chemo cartridge for the 5fu 24/7 treatment. This was the beginning of week 3 of the 3 week schedule.
The nurse also had blood drawn for testing.

I received a call from the head oncology nurse at Hershey Cancer Institute around 4:30 PM informing me that my white blood cells were too low to receive chemo and she would arrange for someone to come to the house and remove the chemo and needle.
Nobody contacted me after that, so I called the nurse at Hershey and left a message.
She called back around 8:15 AM and was shocked that I was still receiving chemo.
Around 9:30 AM the visiting nurse arrived and removed the pump (box) that was attached for the last two weeks.

I had an appointment with Dr Jiang on Wednesday at 3:00 PM.
She decided to give me a break for a few weeks and I go back to see her on November 5th.
She scheduled me for the standard in hospital treatment on Nov 8th.
Good news to me is that she is considering not putting me back on the 24/7 pump.

Thanks to ALL for thoughts and prayers!

Hershey Cancer Institute 9/27/10

Nothing too much to say. I did have the chemo treatment and I am attached to the pump until 10.18.10. I will then get a week off and get another treatment and be reattached for 3 weeks.

The treatment is the original "cocktail" that I started with last year. It did give me hiccups for 2 days, which is murder.

I see the Dr on the 13th for further words of wisdom.

THANKS to ALL

Hershey Cancer Institute 9/1/10

We met with Dr. Jiang to review the results of Monday's CTScan.
Lymph node's have grown (minimally), but she is worried about one that is right next to my spine.
So, the day after we return from Notre Dame (9/27/10) I will have 4+ hours of chemo and have the pump attached for two 21 day cycles (24/7).
I expected nothing but good news after the 4 treatments that we just went through, so I am not a happy camper right now. BUT this will pass and WE WILL NOT LET THIS BEAT US!!!

Thanks for the prayers, comments and thoughts.
Peace, Love and God Bless America.

Hershey Cancer Clinic 8/24/10

Well another day another treatment.

My doctor upped the dosage this time (not sure why she dropped it last time). If it kills more bad stuff, all the better.
It was a long day. We arrived around 11:30 AM and left at 6:30 PM and I have the pump attached until 4:00 PM on 8/26/10.

Nothing much else to report. The nurses are all really nice, supportive and informative about the drugs. They also all ask for Danny and Hanna.

I am scheduled for a CTScan on 8/30/10 and a doctor's visit on 9/1/10.

Then we are off to DisneyWorld on 9/5/10.

We NEED it.

Thanks to all for prayers, support and thoughts!!!

Hershey Cancer Clinic 8/10/10

Well, I guess the third time is the charm.
Had the full treatment (listed in previous posts) for the third of four cycles.
I am scheduled again for 8/24/10.
If all goes well then, I will have a CT Scan pn 8/30/10 and see the results with the Dr. on 9/1/10.
And IF ALL GOES WELL - off to Disneyworld on 9/5/10 returning on 9/11/10.

Thanks once again for the thoughts and prayers.

Dan & Pat

Update 8-3-10

Failed to get chemo for the second time. First time was a low platelet count. Second time was a high heart rate and heavy chest congestion. They prescribed Cipro and Robitussin for the congestion.
I am scheduled to try again on 8-10-10.

If all goes well, I will be finished with this round on 9-1-10.

Thanks to all

Dan

Hershey Cancer Clinic 7/8/10

Hello ALL,
Pretty much the same update as 6/24/10.
A different nurse came by the infusion room to see which Dan Lyons was there.
She said to say hello to Danny and to tell him that Georgetown Hospital was one of the best for his treatment.

Well I had the second of four treatments today at Hershey and the visiting nurse came to the house to hook me up with a chemo pump. I wear the pump for 46 hours and then the nurse will come back to remove it until my next treatment which is scheduled for 7/22/2010.

Here is a list of the medications that I received today and will

continue with the one that is listed last until Saturday at around 3:25 PM.

Ondansetron (16mg) is used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy and surgery. Ondansetron is in a class of medications called 5-HT₃ receptor antagonists. It works by blocking the action of serotonin, a natural substance that may cause nausea and vomiting.

Dexamethasone (20 mg) is a member of the glucocorticoid class of hormones. This means they are steroids but, unlike the anabolic steroids that we hear about regarding sports medicine, these are "catabolic" steroids. Instead of building the body up, they are designed to break down stored resources (fats, sugars and proteins) so that they may be used as fuels in times of stress. Cortisone would be an example of a related hormone with which most people are familiar, though cortisone (more correctly called "cortisol") is a natural hormone produced by the body's adrenal glands whereas dexamethasone is synthetic.

Calcium Gluconate (1gm) is the calcium salt of gluconic acid, an oxidation product of glucose, and contains 9.3% calcium, which is about one-third of the calcium in strength of calcium chloride USP.

Magnesium sulfate (8mEq) (or magnesium sulphate) is a chemical compound containing magnesium, sulfur and oxygen, with the formula MgSO₄. In its hydrated form, the pH is 6.0 (5.5 to 6.5). It is often encountered as the heptahydrate, MgSO₄·7H₂O, commonly called Epsom salt. Anhydrous magnesium sulfate is used as a drying agent. Since the anhydrous form is hygroscopic (readily absorbs water from the air) and is therefore difficult to weigh accurately, the hydrate is often preferred when preparing solutions, for example in medical preparations. Epsom salt has been traditionally used as a component of bath salts.

Oxaliplatin (170 mg) is a coordination complex that is used in cancer chemotherapy. These platinum-based drugs are usually classified as alkylating agents, although they are actually alkylating groups (they function by a similar mechanism)

Leucovorin (700) is used to prevent harmful effects of methotrexate (Rheumatrex, Trexall; cancer chemotherapy medication) when methotrexate is used to treat certain types of cancer. Leucovorin is also used to treat people who have accidentally received an overdose of methotrexate or similar medications. Leucovorin is in a class of medications called folic acid analogs. It works by protecting healthy cells from the effects of methotrexate or similar medications while allowing methotrexate to enter and kill cancer cells.

Fluorouracil or 5FU (800 mg) is one of a large group of drugs known as "antineoplastics"; these drugs are also known as cancer drugs, chemotherapy or "chemo". They are used in the treatment of various cancers to slow or stop the growth of cancer cells. A combination of different types of cancer drugs will often be used to achieve better results and minimize side effects.

Fluorouracil or 5FU (4800 mg) is one of a large group of drugs known as "antineoplastics"; these drugs are also known as cancer drugs, chemotherapy or "chemo". They are used in the treatment of various cancers to slow or stop the growth of cancer cells. A combination of different types of cancer drugs will often be used to achieve better results and minimize side effects.
- This is the one in the pump until 4:30 PM Saturday 6/26/2010 -

Hershey Cancer Clinic 6/24/2010

Well I had the first of four treatments today at Hershey and the visiting nurse came to the house to hook me up with a chemo pump. I wear the pump for 46 hours and then the nurse will come back to remove it until my next treatment which is scheduled for 7/8/2010.

Here is a list of the medications that I received today and will continue with the one that is listed last until Saturday at around 4:30 PM.

Ondansetron (16mg) is used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy and surgery. Ondansetron is in a class of medications called 5-HT₃ receptor antagonists. It works by blocking the action of serotonin, a natural substance that may cause nausea and vomiting.

Dexamethasone (20 mg) is a member of the glucocorticoid class of hormones. This means they are steroids but, unlike the anabolic steroids that we hear about regarding sports medicine, these are "catabolic" steroids. Instead of building the body up, they are designed to break down stored resources (fats, sugars and proteins) so that they may be used as fuels in times of stress. Cortisone would be an example of a related hormone with which most people are familiar, though cortisone (more correctly called "cortisol") is a natural hormone produced by the body's adrenal glands whereas dexamethasone is synthetic.

Calcium Gluconate (1gm) is the calcium salt of gluconic acid, an oxidation product of glucose, and contains 9.3% calcium, which is about one-third of the calcium in strength of calcium chloride USP.

Magnesium sulfate (8mEq) (or magnesium sulphate) is a chemical compound containing magnesium, sulfur and oxygen, with the formula MgSO₄. In its hydrated form, the pH is 6.0 (5.5 to 6.5). It is often encountered as the heptahydrate, MgSO₄·7H₂O, commonly called Epsom salt. Anhydrous magnesium sulfate is used as a drying agent. Since the anhydrous form is hygroscopic (readily absorbs water from the air) and is therefore difficult to weigh accurately, the hydrate is often preferred when preparing solutions, for example in medical preparations. Epsom salt has been traditionally used as a component of bath salts.

Oxaliplatin (170 mg) is a coordination complex that is used in cancer chemotherapy. These platinum-based drugs are usually classified as alkylating agents, although they are actually alkylating groups (they function by a similar mechanism)

Leucovorin (700) is used to prevent harmful effects of methotrexate (Rheumatrex, Trexall; cancer chemotherapy medication) when methotrexate is used to treat certain types of cancer. Leucovorin is also used to treat people who have accidentally received an overdose of methotrexate or similar medications. Leucovorin is in a class of medications called folic acid analogs. It works by protecting healthy cells from the effects of methotrexate or similar medications while allowing methotrexate to enter and kill cancer cells.

Fluorouracil or 5FU (800 mg) is one of a large group of drugs known as "antineoplastics"; these drugs are also known as cancer drugs, chemotherapy or "chemo". They are used in the treatment of various cancers to slow or stop the growth of cancer cells. A combination of different types of cancer drugs will often be used to achieve better results and minimize side effects.

Fluorouracil or 5FU (4800 mg) is one of a large group of drugs known as "antineoplastics"; these drugs are also known as cancer drugs, chemotherapy or "chemo". They are used in the treatment of various cancers to slow or stop the growth of cancer cells. A combination of different types of cancer drugs will often be used to achieve better results and minimize side effects.
- This is the one in the pump until 4:30 PM Saturday 6/26/2010 -

It was a long day, but all of the nurses involved were really good and caring. One nurse who was assigned to a different area saw the name Daniel Lyons on the list of treatments today and stopped by the room I was in to say hello and ask about Danny. They miss having the two Dans around but are also very happy the treatments are becoming few and far between.

Hershey visit on 6/18/2010

I had a CT Scan on the 17th and a visit with my oncologist today.
The two lymph nodes near my throat seem to have disappeared.
There is new activity (growth) next to the original mass.
Ii is close to my spine which worries the doctor. She is afraid that if it grows much more it will start to press against my spinal cord and cause back pain.
So, we start chemo next week and every two weeks for four sessions. Then there will be another CT Scan to see what improvement is being made.
One drawback to this schedule is that after each session I have to wear a chemo pump for 46 hours straight. I guess that is better than 24 x 7 indefinitely.
So there was some good news today. The focus has to be on the good.

Thank you for the support and prayers - keep it going.

Love and Peace to ALL

Thursday April 22 2010

Nothing much to report. It has been a tremendous month. Danny and Hanna were blessed with a perfect day for the wedding. EVERYTHING went as planned and as a parent, I could not be happier.

My chemo treatment is still on hold. I will have a CT Scan in June to determine when or if I start chemo again.
My wonderful and always there bride will be retiring on April 30th and I look forward to many years of us hanging out and maybe a trip or two to Disney.

Sorry for the boring post, I am happy with life the way it is right now.

Today at Hershey Cancer Institute 3/26/10

Went for blood work early today and an appointment with Dr Jiang at
11:15 AM.
Three weeks ago she had discussed the possibility of return to the pump
that needs to be worn 24/7.
For about 5 days Patricia and I were formulating our speech for
this visit, because we wanted to give the pills (xeloda) another chance
and NO PUMP!!!

Well the good doctor fooled us.  She decided that I should have a CT
Scan  next week and another one mid June and she will compare them.  So,
I am not on any chemo at least until I see her in June.

As long as nothing looks new or larger in the CT Scans, I am off of
chemo indefinitely.

Update

Well, all of a sudden I am breathing normally and my appetite is almost normal.
I think that the break from Xeloda has helped and it is finally out of my system.
I see the doctor again on March 5th, I think she will change my medication. We will see what happens then.
Thanks for the thoughts and prayers.

Dan

Short of Breath

The past couple of weeks have not been fun. I have been exhausted and totally out of breath. After several tests, it was decided that I needed another blood transfusion. I went in on Friday and was admitted to HMC. I checked in at 10 AM and was released at 7:15 PM. The longest transfusion that I have heard of to date. I seem to feel better, but I am scheduled for a Pulmonary Function Test, a Blood Test and a visit with the doctor next Friday. The doctor seems to be concerned that my blood counts are not low enough for my shortness of breath.
More to come come next week.

THANKS for the thoughts and Prayers

Dan

Trying Weeks

After two visits to the ER at HMC, they finally conceded that I was receiving too much chemo.
They told me to stop my xeloda meds until further notice.
In the meantime, I have had three "bad" blood tests. On last Thursday I was told that "my blood numbers were in the toilet". The next two tests were not as good as that one.
My cell counts are so low that I have basically been housebound since I can not come in contact with people for fear of infection.
I go back on the 27th for another blood test. If not good, I suspect a transfusion.

In the meantime, HAPPY ANNIVERSARY to my bride Patricia.
COULD not get through this without YOU.