Nick Jones

God, Life, Religion

Tag: Cancer (page 1 of 2)

One Year Later

One year ago, this happened (sorry for the video quality).

September 19, 2014 was my last day of chemotherapy. One year ago today I finished one of the toughest and most challenging journey’s in my life. Three months of essentially killing my body and then bringing it back again was an insane way to spend my summer. But I’m thankful that a year later I am still cancer free.

My journey isn’t finished. I still have regular checkups, chest x-rays, blood work, still working out the anemia thing (which by the way is looking better). But I’m thankful that I’ve made it a year without having to even consider doing chemo again.

Thank you again for all the prayers and well wishes. I know that updating this blog hasn’t been on my radar recently. I’m hoping in the near future to change that. I’ll explain that in a different blog post.

Until then, enjoy the celebration!

Anemia

anemia

It’s been awhile since I updated this blog. I haven’t even thought of it since January. It’s been a rough few months still adjusting to a baby in the house, finishing up an evangelistic series, and training for a triathlon. The blog fell by the wayside. But now, well, I have some news. I’m anemic.

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“Are you fighting a virus?” The words popped out of my oncologists as he entered the room. I was slightly caught off guard. I had been feeling just fine, just had a little runny nose which I figured was due to the pollen in the air (it is spring after all). He must have seen my questioning look and continued, “You’re blood work is a little wonky. A couple of the areas are flipped that shouldn’t be.” At the same time I found out that my kidney function isn’t exactly working properly, “You need to stop drinking,” he quipped (he knows I don’t drink).

I thought back and realized my daughter has been dealing with some sort of sickness for the last week. Coughing, runny nose, you know, cold stuff. I mentioned that to him and he said that this was probably the problem and that I was fighting a virus. So he scheduled a blood draw for the following week (which was yesterday).

But that wasn’t all the news. He also informed me that I am anemic. Not slightly anemic, not just barely anemic, but anemic. Enough so that he informed me that I needed to get more Iron in my diet ASAP. Everything started to click in my mind and things started falling into place. Over the last few months I’ve been trying to get back in shape to be ready for the Onion Man Triathlon at the end of May. Yet I have been struggling with my breathing quite a bit. I always seem to be out of breath, and I have been tired a lot. It was if a light turned on.

Of course he had some recommendations for me. His usual recommendation for people is meat. As well as knowing that I don’t drink, he also knows I’m a vegetarian, so he had two suggestions: over-the-counter iron supplement, cast-iron skillet. I’ve been clamoring to buy a cast-iron skillet for years, and now I had the prescription to do so, “Oh Julie. My Doctor says I need a cast-iron skillet” (I’ve been waiting years to say something like that).

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What is a anemia? Well you can see from the definition in the picture above that it is a condition where there is either a reduction of red blood cells or reduction in size of hemoglobin. Simply put, the red blood cells and hemoglobin carry oxygen to the various parts of the body that needs it. It’s extremely important for athletes to have larger red blood cells because they will carry more oxygen to the parts of the body that need it during exercise.

(Side note: this is why some cyclists in the past have done blood transfusions during a cycling race. The blood was taken while they had been training at altitude and the red blood cells could hold more oxygen and was put on ice until it was needed. During the race in one of the evenings between stages they would do a transfusion so the cyclists would be ready for the next stage.)

Anemia is not cool. There are many people that deal with anemia, and quite a few of them are vegetarians. It’s harder to get the iron in your blood on a vegetarian diet if you don’t know what to eat. Legumes (lentils, kidney beans), Grains (quinoa, oatmeal), Vegetables (collard greens, swiss chard) are all excellent carriers of iron (Here is a great site by the way dealing with iron for vegetarians).

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Being an athlete and loving triathlons, this was discouraging news. However, I felt as if there was hope. I would start the iron supplement, get the cast-iron skillet, add more foods with iron to my diet and be back to normal by the triathlon. My doctor looked at me and said, “Don’t expect it to happen that quickly. It could take a little longer than that.”

Translation: Don’t expect to break any records at the triathlon and take it easy. That’s what I’ve been planning to do all along. Now that just got a bit harder. I’m determined to compete, but it’s not going to be at a high level, it’s going to be to finish, and to finish strong. I’m a cancer survivor, I will not let this stand in my way.

Chemo – Day 1

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While I don’t plan on blogging every day, I figure that I should at least memorialize the first day of chemo with a blog post. I mean seriously, who isn’t curious about my first day of chemo? I know I’m totally wanting to read about what’s going on. By the way, I had some fun with my hair there before shaving it all off in preparation for chemo. Yes, the type of chemo that I am having is a type that many people lose their hair. So I’ve shaved my head in anticipation of that.

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Currently I’m sitting in my chemo chair receiving the last hour’s worth of chemo. It’s been a long day. I think there’s only been one other person that has been here longer than I have. Everyone else has come and gone while I’ve been here. It’s tough to think that there are actually people getting infusions that are longer than mine (6 hrs!). So far I feel pretty good. I know not to expect that every day is going to feel like this as this stuff is pretty nasty, but today hasn’t been too bad.

I’ve been updating Instagram, Twitter, and Facebook with pictures and status updates for people who follow me. I’ve also been responding to quite a few text messages and other messages on Facebook. I’m very thankful that Hematology, Oncology, and Associates here in Medford have wifi in their infusion room. It’s been a major blessing to read all the notes of encouragement as I go through this six hours of infusions.

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I got here at 9:30 am, right on time for my appointment. It took them awhile to get me into the infusion room and set up. It’s amazing how many people are upbeat and in good spirits despite what this room represents. The nurses are all supportive and friendly and willing to help with anything that I need.

Today my wife took time off work to join me to see what I’ll be going through every day this week. It’s been great for me that Julie has been here. Even though as the nurse was getting ready to stick me with the needle she told Julie that pregnant ladies are usually discouraged from coming because of all the medicine around. Not good for the baby if something were to happen. However, it’s ok for her to stay.

Once the IV drip started it’s been a constant up and down for me. Every 20-30 minutes I get to head to the bathroom. Because the etoposide is pretty nasty for the kidneys, I get a pre-infusion of potassium chloride to get my kidneys working and body hydrated to help keep the stuff from making things pretty bad for me. This is why I’m here for so long, and why I will have an intimate knowledge of the infusion room bathrooms. Speaking of bathrooms, I need to use one right now.

What’s Next

what next

We walked into the doctors office apprehensively, knowing that I would be heading towards Chemotherapy yet not knowing what type, how long, all the side effects, etc… I’m pretty sure we were last appointment of the day because my doctor took a lot of time to walk though all the different options and drawbacks (I’ll be honest here, all options have drawbacks and none of them are great).

The two options I had was radiation or chemotherapy. If I chose chemotherapy I would have two options under that. We quickly bypassed radiation because there have been cases of people getting secondary cancer as soon as 20 years down the road (I would be 50!). That left chemotherapy.

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For testicular cancer there are two main types of chemo that is used (For an in depth look at chemo for testicular cancer click here). First is called BEP (Bleomycin, Etoposide, and Cisplatin), and the second is called EP (Etoposide and Cisplatin). The only difference between the two if you didn’t notice is that BEP has Bleomycin and EP doesn’t have Bleomycin. The reason for that is when Bleomycin is used they are able to reduce the chemo cycle by one. So instead of being four cycles of EP, it’s three cycles of BEP.

But there is a side effect of the BEP that I am unwilling to risk, Bleomycin can damage the lungs, and while on Bleomycin you can die if you’re put on oxygen. There is also the risk of reduced lung capacity due to Bleomycin. As someone who loves to exercise (cycling, triathlons, SCUBA) I am unwilling to take that risk because I want to continue to do those things at my full capacity.

There are side effects of EP that I’m not looking forward to either: Hearing loss, numbing or tingling sensation in hands and feet, kidney damage, hair loss, sterility, and many more. None of the options are a walk in the park. But as my wife and I talked with my doctor and started looking at the future we kept coming to one option that seemed to work best for me.

We chose to do the four cycles of EP. The way the cycle works is that for one week, Monday through Friday, I get the medicine every day for about 6 hours. Then I have two weeks to recover. On the third week I go through the same process, Monday through Friday, six hours of getting medicine. It’s going to be rough, and I’m not looking forward to it. The hardest part is not knowing how I’m going to respond to the treatment. Some guys take it well (My doctor said drunks do very well with chemo because for some reason their livers can handle it better than most). Some guys end up flat on their back and don’t do very well. It will be interesting to see what happens. But I am thankful for all the encouraging words I’ve been getting on Facebook, twitter, and here on my blog. I do covet your prayers.

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One things that I’d like to clear up before I end this post, I’ve been asked a few times why I didn’t do chemo right after the orchiectomy. There are several reasons. First, we believed that we had gotten the cancer. We believed that it had been contained to the testicle. There was no evidence that it spread, so observation seemed to be the best course.

Secondly, radiation and chemotherapy have a side effect that would impact my family, possible sterility. With radiation it’s pretty much localized near that area and it could cause sterility. With chemo the risk is higher. The chemicals used can cause sterility. Because my wife and I wanted to have a child we opted to do observation so that we could have that option available to us. During these six months we were indeed able to conceive and my wife is pregnant with a girl. Praise the Lord for that.

Thank you again for all your prayers and support. As always, my purpose is blogging this adventure is to help bring awareness to Testicular Cancer, and be an opportunity for other men who may be struggling with the same feelings know that they aren’t alone. Many men have gone before, many men will go after. But we’re a tight knit community. We understand and I am wiling to answer any questions that you have.

Blessings!

My Cancer is Back

cancer is back

“You’re blood work looks good, but your CT doesn’t look so good.” That was not what I wanted to hear after being told six months ago that I was cured. I went into the meeting with my oncologist in high spirit, and left dazed and confused. “What is going on?” I thought to myself as my son and I headed out to the car after the appointment. Needless to say I’ve spent much time in prayer about this the last couple days.

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The result of the CT scan indicated that I have an enlarged Retroperitoneal Lymph Node. That particular lymph node is located behind all the major organs and belly. If Testicular Cancer isn’t caught in time it spreads first along the lymph nodes. That is why I was scheduled to have a CT Scan every 6 months, to make sure everything looked good. If nothing is done then the cancer will spread from the lymph nodes to the lungs, then the liver, and then the brain. So the doctor ordered a chest x-ray which I will be getting early this afternoon.

After explaining to me what exactly was happening, my oncologist told me that he had consulted with an expert in the field here in Oregon and the suggestion is that I have a Retroperitoneal Lymph Node Dissection (RPLND), aka very invasive surgery. This time instead of making a small incision to take the testicle out, they will be making a large incision, from the bottom of my sternum to just below the belly button, to reach back behind all the major organs and cut out the lymph node.

Because I was in shock with the news the only thing I could really do is nod and listen. I hadn’t really continued my research as to what would happen if the cancer spread because I was told that I was cured. When I got home I contacted Mike Craycraft from the Testicular Cancer Society to let him know (If you don’t remember who he is, click here). Minutes after I sent the message he replied stating that I needed to look into other options. Evidently the National Comprehensive Cancer Network has guidelines for times such as this. And with a Stage II Seminoma the guidelines state that I should proceed with Chemotherapy first. It is much more common that the RPLND is performed on someone with a Non-Seminoma.

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After giving my doctor a call (twice), he finally called back this morning. He had received a call from the doctor who would be performing the RPLND questioning the need of the surgery since it’s not usually done that way. So my doctor said that we would be going with Chemotherapy and that we needed to meet today to talk about that. I will give an update tomorrow about that conversation.

So we’ll be meeting later this afternoon to discuss Chemotherapy. The lesson learned, if you’re going through this you need to be your own advocate. Do the research (Testicular Cancer SocietyTesticular Cancer Resource Center are two great places to start), don’t be afraid to call out what you’re uncomfortable with. Don’t be afraid to reach out and contact people who have gone through it before. It’s your health and your life.

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