Saturday, February 11, 2006

2. What do I do now ?

Shortly after we got home, my parents, sister and her daughter came to the house to here about the results. We sent my niece upstairs to watch our girls while we discussed the diagnosis. It was conversation that had no tears involved, but the tension and concern were in the air. One of the comments I made was that I was still planning on doing the Half Ironman in Florida despite the diagnosis. I didn’t know how that would fit into treatment, but I was still going to do it. We decided not to tell the girls just yet. Sharon and I needed too discuss the best way to do this.

That Friday night was an extremely long night. We were aware of the diagnosis, but it just didn’t seem real yet. But it was real enough that neither of us slept for more than a few minutes at a time. How could I have cancer? Why me? What did I do wrong? What was wrong with my body that allowed me to get cancer? I don’t drink. I don’t smoke. I don’t do drugs. I was healthy and very active. I always tried to do the right thing, so I should have good Karma. What went wrong? What was going to happen in the course of treatment? Was I going to turn into a cancer patient that was hairless, ashen in color, thin as a rail from suffering through the treatment? I don’t feel sick. How can I have cancer? What if I just ignore it? Maybe the diagnosis was a mistake. Maybe a second opinion will contradict the diagnosis and this can just go away. What will our girls think? How do we explain this to them? Am I going to die? What is this going to do to us financially? Will our insurance cover this? Do I really have cancer? I don’t feel sick, how can I have cancer?

Saturday morning rolled around and I left the house headed for the Dallas Athletes store to meet up for the morning bike ride. When I got there, I was still numb from the news, but needed to tell some people. I needed help in dealing with this news. I remember talking to Tom R, Kristin V, Kathi W, Dave D, Dan J. I know I told others as well. It felt good to ride that morning. It was a quick 22 miles. I had to cut it short because my daughters were going to be performing on stage in Lewisville that morning with the dance school they were involved with.

After the dance recital, we had lunch, and then headed to the house. Sharon and I had come up with a way to talk with the girls.

We sat them down and I began to explain that the bump in my neck that the doctor removed was something called Hodgkin’s Disease. I went on to tell them that although I looked ok and felt ok, I was indeed sick. I saw a look in my 7 year olds eyes, and I asked what was wrong. She wanted to know if she could catch it from me. I assured her that she would not catch it from me. I went on to explain that it was going to take a while for daddy to get better. It wasn’t going to be next week or next month and I was better. It could take 6 months or maybe a year. We just didn’t know yet. There would probably be times that I stayed in bed. I might even need to stay in the hospital sometimes. We just did not know yet. I was also going to being going to the doctor a bunch if times. Sharon and I both said several times that daddy was going to be ok. We also mentioned that sometimes Hodgkin’s is called cancer. We wanted to make sure they heard that word form us.

We also made them pronounce the word “Hodgkin’s”. That was fun. We got everything from Hogins to Hawkins. The tough word was Lymphoma. Lifoma, Limoma, Lymphona, Lindoma….we got quite the range….but they finally got it right. It was a bright spot in a tough moment. We wanted to make sure they knew what daddy had.

The first visit to the Oncologist was a couple of days later on Tuesday. It was then we learned what would happen next and what to expect as time went on. We learned there a lot more tests to come and another surgery. We learned that he thought I was stage 1A or 2A based on his physical exam of me. We learned that I would most likely be on an ABVD chemotherapy cocktail for 4 cycles (8 treatments-1 once every 2 weeks) followed up by 1 month of radiation treatment. Side effects included hair loss, sterility, loss of appetite, nausea, fatigue, low immunity to infection, mouth sores, dry mouth, lung damage, heart damage…..and the list went on…

I explained that was very active physically with Triathlons and could I continue to participate? His response was that I could do what I felt like doing. He did recommend that I stay away from the swimming pool as they are a good place for bacteria to hang out, even with chlorinated water. Chemicals aren’t always as they should be in a pool.

The tests required were a PET scan (to detect where the cancer is), MUGA scan (to baseline my hearts ability to pump blood), Pulmonary Function Test (to baseline my lung capacity), more blood tests. These would all help determine the extent of the cancer and the best treatment path to take.

Another surgery was scheduled to place a “Medi-Port” in my chest. This allows them to put the chemo drugs into large veins and prevent damage to the smaller veins that would occur if they just put them into my arm.

Somewhere in here ( I don’t remember the exact date) , I called Pauline and told her about the diagnosis. I needed to keep my guardian angel in the loop.

14 Comments:

Blogger nancytoby said...

We're cheering for you! You may want to stop by my friend Holly's blog at http://triandbehappy.blogspot.com/ - she has been battling melanoma for almost a year, and has a port too.

Best wishes to you and your family.

11:11 AM  
Blogger Kris said...

Hey Ken - Kris here - I'm Brent M.'s (in your H2F group)wife. SO glad you are telling your story...No way to know WHY, but to maybe use your experience to inform and possibly encourage others is truly a blessing. Keep it up...know there are many prayers for you guys as you set off on this battle. Keep ridin' - hope to meet you in person soon!

9:32 AM  
Blogger Holly said...

Ken, be your own advocate, ask a million questions, keep up the exercise as much as possible, get plenty of hugs and kissed from your wife, girls and family and LIVE STRONG!

Your athletisim and healthy lifestyle are a huge asset as you get ready to fight!

Be a survivor!!! My thought and prayers are with you.

8:40 AM  
Blogger Shelley said...

God speed!! Will be sending healing vibes your way!!!

9:50 AM  
Blogger Flatman said...

Hey Ken,

I will be following you on your journey and cheering for you the whole way! Keep your attitude up, man! For yourself and your family. I will be praying for you!

10:49 AM  
Blogger jsoulnh said...

Hi Holly sent me to your blog. I am a Hodgkin's survivor, stage 2b (treated 18 years ago when I was 29!) I also had ABVD and radiation. No recurrences since...and I have been doing triathlons since 1999 - which includes an Ironman. Wishing you all the best for the treatments ahead! --Johanna in New Hampshire

7:03 PM  
Blogger K. Todd Storch said...

Ken,

I continue to be inspired by your words and actions. Seeing you finish up last Thursday's run was so awesome, especially knowing you had another chemo treatment the following day.

I am cheering you on to so many and prayers continue for you and your family.

Thank you for sharing all of this.

Todd
www.toddstorch.com

9:36 PM  
Blogger Iron Benny said...

Wow, you totally have my support. I hope things work out for you. You are being really strong for your kids. Best regards to you and your family during this challenging time.

10:30 PM  
Anonymous Nita said...

Ken,

What a great idea to document your journey. That in itself is a very healing thing. You have an awesome attitude and are an inspiration to us all.

You, Sharon & the girls are all in our thoughts & prayers. Take care and keep up the positive attitude!

Nita

8:43 AM  
Blogger TriFeist said...

Thank you for sharing your story with such candid honesty. If it helps, two friends friends of mine are 4+ years cancer free after treatment for Hodgkins.

1:22 PM  
Blogger Mojo said...

I'm so sorry to read about your diagnosis. I had Hodgkin's 10 years ago(I was 18) and had ABVD and the port too. If you ever need to chat, stop by my blog.

You sound like you have a good attitude about it laughing with your kids about pronouncing "hodgkin's". Keep laughing and smiling. I'm know you'll beat the cancer too!

12:22 PM  
Blogger Owen said...

Hi Ken,

I also was recently diagnosed with Hodgkin's Disease. I too am an athlete who is in excellent shape.

I'll follow your progress. You can follow mine at ptld.blogspot.com.

What do you say to do a ride after we've beaten this?

OTA

10:20 AM  
Anonymous Brian said...

Hey Ken

Saw your comment on Duane's blog and just wanted to give you good news on your Ironman aspirations. I've got Hodgkin's, stage 4B and initially went through ABVD (six months worth). I felt pretty tired after the first couple, but around the halfway point I started playing hockey again and went back to working out with a trainer a couple of times a week. The first game was really, really bad, but by the end of the season and the treatments, I was feeling better than a lot of the "normal" guys on my team.

Just remember as you research things and read other people's blogs and such that everyone's cancer is different and everyone handles their treatment differently. While I was nauseous, I never threw up and while I had some hair loss, I kept it all (until I started on a second chemo afterwards, anyway).

If your wife's up to it, I'd highly recommend that she be the Holder of the Symptoms and Side Effects. Any time I get some new drug pumped into my system, my wife gets the side effect & symptoms list and I don't read it. If something feels wrong with my body, I tell her and she checks the list. My mind is pretty good of convincing my body of how it should act, so as long as I don't know I should be feeling symptom A, I don't have symptom A. It's worked for me for the past year of battling this thing, so it might help you out too.

I'm currently in the middle of a site re-design and the new one's going to have a link to "People also making Hodgkin's their bitch." You'll be right on there with the rest of us, my friend.

Good luck, and let's beat this thing!

11:15 AM  
Blogger Duane said...

Hey Ken,

Thanks for posting a moment on my blog.

Real sorry to learn about your diagnosis. It seems like you're in great shape and very active. If this can happen to you, man, it can happen to anyone. Cancer sucks. Nonetheless, I wish you and your family the absolute best during this very difficult period. There are lots of great resources out there, so please don't hesitate to use them (such as the Leukemia and Lymphoma Society, Lymphoma Research Foundation, American Cancer Society, National Cancer Institute). I'd be glad (as I'm sure any of us cancer survivors would) to tell you about other good sources that deal with a variety of issues: financial, insurance, medicine, fertility, etc. And I'll check your blog regularly. Please continue it. I have found it to be such a great and informative outlet.

Best to you, prizefighter.

Duane

8:24 AM  

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