backstagefour

Another surgery

It’s been a little while since I updated everyone about my health. Since my lung surgery on March 25, my lung has collapsed three times. As I write this, my lung is partially collapsed and I’m now collecting fluid in my chest cavity. There is a hole somewhere in my lung that is allowing air to fill up in my chest cavity. The air that builds up puts pressure on my lung and the lung collapses. Each time my lung collapses, a chest tube is put in to remove the air, which allows my lung to expand. The lung usually heals itself, but it can’t when it’s collapsed. The doctors are not exactly sure why this is happening. Since fluid is building up and I’m experiencing pain, I’ll have surgery soon, possibly this Wednesday. The surgery is similar to looking for a hole on a tire. After putting some liquid over my lung, the doctor will look for bubbles and then decide on the best way to seal my lung. This will be my first surgery where they are not planning on taking anything out so I’m hoping it will be quicker to recover, but it still is a major procedure. I’m more concerned about being off of chemo an additional four weeks. I know that may sound strange, but I have been off of chemo since the first week of February and this surgery will push my chemo start date back another four weeks. I’m anxious because each time I’ve been off of chemo for an extended period of time, my cancer has come back.

This past month has been really hard on my family and me. All of this is complicated and out of my hands. I drive myself crazy trying to predict all the different scenarios ahead of me and trying to control the future. I read this quote, in a daily devotional book, and found it appropriate for my situation; “A mind preoccupied with planning pays homage to the idol of control. ”  This quote pulls me back to living in the present and appreciating the moment.

Here is a great article from Psychology Today showing the mindset of advanced stage cancer survivors. The article describes common characteristics of cancer patients who have lived past the past the five-year survival timeframe. I’ve also known many beautiful cancer patients who lived this way and didn’t live to the five-year survival timeframe. It goes to show you how complicated cancer is and how it is individualized. Either way, I really connected with this article and believe this article closely represents my mentality with fighting cancer.

https://www.psychologytoday.com/articles/201503/the-new-cancer-survivors

After reading the psychology today article, you can look up my name and my work personal statement at psychologytoday.com. Please refer anybody to me who may be struggling with a chronic illness or disease.

Kevin Wein’s profile

-On a different note. I had a great pre-surgery weekend with Gerrit Benson, Matt Leslie, and Roger Nouer. We shared many funny stories and I had a lot of painful laughs (laughing, coughing, hiccups, and shortness of breath episodes are painful). Also, thanks to Kevin Gladstone who ran in a marathon this weekend and dedicated it to fighting cancer. You’re the man Kevin.

Please send prayers and good vibes my way these upcoming weeks.

Spoke Too Soon

I was doing well or so I thought.  Three or four days ago I began to notice an area, above my incision, would puff out when I laughed, coughed, or certain times when talking.  Along with this air pocket, I had numerous smaller pockets, similar to Rice Krispies in size (the doctors actually use the term “Rice Krispies”), under my skin, stretching from my hipbone to my armpit and covering a portion of my back.  I wasn’t experiencing any pain and I’ve had a few Rice Krispies with my previous lung surgeries, so I wasn’t too worried. Because I was feeling better than I had been with any of my previous lung surgeries, I hadn’t planned on calling the doctor till after the Easter weekend.  Janie, as usual the wiser of us, strongly suggested calling the doctor.

The doctor suggested going to the Emergency Room to get an evaluation. The results of my CT scan showed my right lung had collapsed. The bizarre thing was that I wasn’t experiencing any shortness of breath or pain. They were surprised to see me doing as well as I was for having a collapsed lung. They put a chest tube in to allow the air to leave and to get my lung functioning properly. I’ll have the chest tube until my lung is healed and there is no longer any air under my skin. I was discharged from the hospital this morning and I’m in more pain now than I was before going to the Emergency Room. It’s because I wasn’t using my injured lung and now it’s inflating thus aggravating the surgical site.

So again there’s always the unforeseen that happens. The good thing is I’m able to spend Easter weekend with my brother and his family. And I was able to catch it before I had any serious complications.   I hope everyone has a great Easter/ Passover weekend.

Back Home

While in the hospital, I was unable to access my blog page and update everyone of my surgery. Well the surgery was successful. The surgeon was able to remove the tumor from my lower lobe in my right lung. She was able to use my previous surgery entryways to access the tumor. I will wait four weeks and then go back on chemo. I’m looking forward to going back on chemo because, in the past, tumors have grown when I’m off of chemo. I had a PET scan the Monday before surgery and it only showed the tumor that was in my right lung. I’ve been in this situation four times previously only to have my world turned upside-down. This time I’ve learned not to get ahead of myself and appreciate the present moment.

The complicated thing about this surgery had nothing to do with me. It actually involved my children, my wife and a stomach virus. My surgery was Wednesday, March 25^th and my daughter Katie had a stomach bug beginning Sunday night. She was better by Wednesday, but Anabel became ill on Wednesday night. Followed by Janie getting the bug on Thursday afternoon. I was ready to leave the hospital on Friday, but couldn’t go home. My aunt, Nurse Ratched, and uncle, Dr. Murray Ziggleman, offered their home to me and provided excellent patient care. Last night I had the green light to return to a sanitized, virus-free home.

I included Janie’s facebook post from the hospital with this blog because it incorporates a little bit of everything.

Kevin’s surgery was successful. The surgeon was able to remove the tumor and said his lung looks great. She was amazed to see hardly any scar tissue from his previous three surgeries. I want to thank all of you for your constant support, love, acts of kindness and friendship. We cannot fight this without our family, friends, neighbors, coworkers, doctors, church and most importantly faith. We did not think that we would have surgery as an option again. In October of last year Kevin was even told by one of his main doctors that there was nothing else they could do for him. We were devastated and scared because we felt like we were living our best life full of positivity, love, and hope in an almost normal way. Did she really just tell us to give up? We felt like she gave up on us. We then went to our local oncologist and team of doctors where they brainstormed other combinations of treatment, fought for him on tumor boards, and most recently fought for the option of surgery. I believe these doctors are like many of you and me in that when we look at Kevin, we see a better version of who we want to be and then do whatever we can to help him, or in a doctor’s position, save him. Kevin is so likable and lovable because he truly likes and loves everyone he meets…Except for the Dallas Cowboys, and most times he dislikes the New England Patriots, except when the Patriots are playing against the Cowboys. So let’s keep fighting and living our best life. We will give more updates as we begin to recover. Love and hugs to you all. xx, Janie

A friend of mine passed away last week from colon cancer. She too was in her 30’s and had two children, ages 6 and 3. She was the first person I met who was like me. I followed her example on how to fight this disease. She inspired me to create a blog and share my story. Please hold Leah, Bryan (her husband), Elly (her daughter), and Drew (her son) in your thoughts and prayers.

Band Together For Leah Bracelet

Hello March

I know I have not posted anything in awhile, but it doesn’t mean I haven’t been busy. It’s actually quite the opposite. Janie and I went to Bosnia-Herzegovina and Croatia in mid-February and since coming back it’s been a whirlwind. I plan to write a separate blog about our trip. This post will be an update of my current medical situation.

I had a CT scan on Monday, February 23^rd, and got the results on Wednesday, February 25^th.   The results were complicated, similar to most of my scans. I had two tumors deemed undetectable and the other one doubled in size. Since it was complicated and I’m running out of chemo options, they presented my case at tumor board. A tumor board is a group comprised of medical oncologists, radiation oncologists, and surgeons who collaborate on forming the best treatment plan. They met on Monday, March 2^nd to discuss my case. They decided the best option for me would be to have surgery to remove the one nodule. The choices to remove the tumor were ablation, radiation or surgery. They believe being aggressive thus far has helped me and not to slow down now. Surgery would be the sure way of getting the tumor out of my body. They decided to hold off on radiation because my body can only handle a certain amount of radiation and it’s best to have radiation as an available option in the future. This tumor appears to be resistant to treatment and will continue to grow unless it is removed.

The procedure does not come without it’s own worries. I’m worried about being off of chemo for 10 weeks (6 prior to surgery, 4 after surgery). The previous times I’ve been off of chemo, cancer cells had reappeared. Both of those times I was off of chemo for 5 months and this time will be half as long. But it will still be a thought in the back of my mind. When I think about being worried about future scenarios, it’s a sign to me I’m not present in the moment. This thinking leads me to not appreciate where I am in my life.

I have a lot to be thankful for today. I had a brain scan this past Wednesday and I’m relieved it was clear of any cancer. I’m also relieved the tumor board did not recommend changing my chemo to my final chemo option. I’m thankful I have options, but the next chemo option will be rough on my body and I’ll be on it forever or until it stops working. I’m thankful my body will be able to handle my 4^th lung surgery. I’m thankful I have the support of so many people. All of your support gives me strength to be optimistic about having my 6^th surgery in the past 18 months.

Today is Colon Cancer Awareness Day. Please keep in mind and in your prayers all of those who’ve been diagnosed with colon cancer, especially the newly diagnosed and their families.

Today is also my mom’s birthday. Happy birthday Mom.

A New Year

The New Year is always a time of reflection for me. In 2014 I experienced some of my darkest times, but I also experienced immeasurable love and joy. 2015 has had a wonderful start. We were able to spend Christmas and New Years in Florida. A year ago, my father reserved a condo at the beach. I was praying everything would work out and I would be healthy enough to go on the trip.

All of us had a great time. Janie, Katie, Anabel and I were able to spend a day at Disney World and we had an awesome time. Disney has never been a big thing to me, but now with kids it’s so much fun. I love seeing the excitement on their faces that comes with Disney. Katie and Janie were rock stars and stayed there till midnight. Anabel went on her first ride, a baby roller coaster, and cried once her mom screamed on a turn. This trip was what we all needed to celebrate my last scan. The past year had taken a toll on all of us.

In an earlier blog, I wrote about how this upcoming summer will be better than the last. One of the main reasons is because we have some once-in-a-lifetime travel plans. My mother-in-law, is retired from the airline industry, gave us her companion ticket passes for 2015 (Thank you Tia Mali and Tio Roj). When Janie and I found out, we started discussing places where we would like to travel.  At first we discussed going to places with beautiful beaches and Hawaii quickly jumped to mind. Wouldn’t it be perfect, especially since it’s been so cold lately? We had our Hawaii travel books and I was contacting some friends in Hawaii about things to do. But then we both slowed down our thoughts and realized we needed to do a spiritual retreat first because of our many blessings over the past year. So we are off to Croatia in February. Yes, Croatia in February. The weather will be a little different than Hawaii. I’m going to a little farming village called Medjugorje where the Virgin Mary has been appearing everyday since 1981. Many people have experienced beautiful graces and miracles while visiting. This will be a spiritual retreat filled with lots of prayer and meditation, which will lead me to feeling closer to God.

We have many travel plans this year besides Medjugorje. So if you want to hangout, no matter where you live, let me know because this is the year for me to travel and see you. Janie and I are going to be traveling the world like Jay-Z and Beyonce this year (minus the good looks, wealth, fame, and pretty much everything else).

Today marks the second anniversary of my diagnosis, but it feels like a lifetime because of how cancer has impacted every facet of my life. During this time I believe I’ve grown as a husband, father, son, brother, and friend. For that I’m very thankful and I’m thankful because I know I’ll continue to grow. These two years have been trying, to say the least, and even though I thought this would be behind me by now, I realize that I’m exactly where I’m supposed to be. Even though sometimes I still struggle with accepting my situation, I know I’m on the right path. I’m very thankful for all of the love and support my family and I have received over the past two years.  I’m grateful for reconnecting with old friends, making new friends, and the ones who’ve been there each step of the way.

I have some more friends in need of prayers and positive vibes. My friend Sara has a young family and her cancer has been restaged. Also pray for Deborah whose colon cancer has returned. As well as for Josh, who’s 28 has colon cancer and is expecting his first child next month and Eddie who has colon cancer and a young family. Please hold all of them and their families close to your heart.

Janie and I after a long, beautiful, relaxing day at the beach.

Katie, Dumbo, and I

Katie and Anabel

Girls playing on the beach

Rejoice

Praise God, I had my first positive chest, abdomen, pelvis scan in over a year. My two tumors shrunk in half. This is such wonderful news for me and my family.  There could be cancer on some scar tissue but they’re not 100% sure. Either way today is a joyous day.

A little background about leading up to today’s scan.  After my last scan, one of my oncologists told me to not go on this chemo because it only works on 10% of the patients in my situation. She encouraged me to go off chemo for a month so I would be eligible for a clinical trial.  Going off of chemo scares me because my cancer has grown every time I’ve stopped.  I then met with my local oncologist who told me to try the chemo and I am so grateful I did.  The plan is to keep riding this chemo as long as I can.  This chemo has extended my life by two months and I’ll take every second I can to kiss and hold my family.

Scans are so nerve-wracking for me because my life can change so dramatically based on a 30 minute appointment with my oncologist. Janie and I both witnessed positive signs leading up to my scan, but I questioned the signs thinking they were there to cheer me up for bad news. My results remind me to always have faith with every outcome. On December 17th of last year, I learned my cancer was never completely gone and I was devastated and confused. Today I am overjoyed with love. (I kissed my oncologist on the top of the head once he told me the news). I can’t thank all of you enough for your support during this crazy ride. I wish I could kiss all of you on the tops of your heads.

Recent Brain Scan

My brain was clear of any cancer. Thank you for the prayers and positive messages. Let’s keep it going for next week’s chest, abdomen, and pelvis scan. The reason I can’t do all of the scans on the same day is because there is a separate machine and contrast for the brain.

As I was lying down in the MRI machine, listening to Christmas music (switched it up from reggae), I was thinking how strange my life is. Here I am in the basement of a hospital on a Tuesday night (7PM) having my brain scanned for tumors while listening to Christmas music. Sometimes my life is surreal. But I would go through that each time to get these results. Thanks again for the prayers and words of encouragement.

Good News, Bad News, Who Knows?

Back in the infusion center

I had two recent scans. My brain scan was clean of cancer. Good. My chest and abdomen scan showed one tumor shrinking, one tumor getting larger and a new cancer area in my lung. Bad. This is a perfect example of how complicated it is to understand and treat cancer. The treatment was effective for one of my tumors but not the other. Since there is a new growth area in my lung and tumor growth, I started a new chemo. The new chemo regimen is taking 7 chemo pills each day for two weeks and off one week and a chemo infusion every three weeks. I’ll follow this routine until my next scan in mid-December. Along with my chemo pills, I take pills prescribed by my integrative holistic medical doctor. In all, I take 37 pills a day and inject myself daily alternating with mistletoe and bovine marrow. I recently included acupuncture into my treatment regimen.

I heard a story recently that represents my ups and downs with cancer and helps my perspective. I like the story because I don’t know what’s in store for me. One thing I do know is I will continue to experience highs and lows. This past Saturday was a high day. I went to a fall festival at my daughter’s school. It was a beautiful fall day, sunny, cool with a little breeze. While watching my daughter and her friend ride on the carnival swing ride, I saw Katie kick off her socks and shoes. I thought to myself, what is she doing? She then spread her arms wide and stretched her bare feet straight out in front of her and pretended to fly as the swing went in circles. I stayed in that moment watching her fly and was glad I didn’t miss it by looking at something meaningless on my phone. I watched her happy innocence in admiration and longed for the days when I was carefree. My life may not be carefree, but at the moment I was flying carefree.

Good Luck Bad Luck!

There is a Chinese story of a farmer who used an old horse to till his fields. One day, the horse escaped into the hills and when the farmer’s neighbors sympathized with the old man over his bad luck, the farmer replied, “Bad luck? Good luck? Who knows?” A week later, the horse returned with a herd of horses from the hills and this time the neighbors congratulated the farmer on his good luck. His reply was, “Good luck? Bad luck? Who knows?”

Then, when the farmer’s son was attempting to tame one of the wild horses, he fell off its back and broke his leg. Everyone thought this very bad luck. Not the farmer, whose only reaction was, “Bad luck? Good luck? Who knows?”

Some weeks later, the army marched into the village and conscripted every able-bodied youth they found there. When they saw the farmer’s son with his broken leg, they let him off. Now was that good luck or bad luck?

Who knows?

Everything that seems on the surface to be an evil may be a good in disguise. And everything that seems good on the surface may really be an evil. So we are wise when we leave it to God to decide what is good fortune and what misfortune, and thank him that all things turn out for good with those who love him.

Author Unknown

http://www.naute.com/inspiration/luck.phtml

Pray, Hope, and Don’t Worry

I have a busy week ahead of me.  I have a brain MRI tomorrow morning and a CT scan of my chest and abdomen next Wednesday.  The MRI and CT scans are to see if the cancer has grown, increased, or spread.  Overall I’m feeling good, but I am feeling more fatigued this week. My chemo dose was increased this past cycle and I noticed I was more tired than previous cycles.  But the side effects are not as bad as my other chemos.  I am looking forward to my week off of chemo, which starts this Friday.  I’m also excited because it’s Anabel’s 2nd birthday on Saturday and it will be a fun weekend with Janie’s mom and brother visiting to help partake in the festivities.  Special thanks to Gerrit Benson and Mat Leslie for visiting this weekend and playing in a golf tournament with me and Tom Michaels.  This weekend was full of special moments and ringing ears.  In regards to my upcoming medical tests, all I can do is pray, hope and try not to worry.  I ask for your prayers, positive thoughts and positive vibes for the days ahead.