Boas Notícias . . .

My sister Catharine Always makes me look good, even after 3 months of chemo.

So this past Friday, my doctors made it official. My CT Scan showed no evidence of metastasis (spread) of the cancer. Lymph nodes showed no inflammation and all of my internal organs appear cancer-free. My blood tests showed I haven't recovered fully from the chemotherapy and in fact I still am suffering some of the lingering side effects, but I'm on my way to a 100% recovery. Medical orthodoxy requires five years of being cancer free before I can say I am cured, but this is the best possible news I can get at this time.

I also underwent minor surgery to  remove the port that was the conduit for the cocktail of drugs that hopefully will have kept the cancer from ever returning. The pain of the surgery was minor, much less than when the port was put in. When the doctor showed me the blood covered device after its removal, I felt a sense of victory. I knew that it meant I could increase my physical activity and return to some sense of normalcy, though normal is rarely used to describe me.

I have to thank again the great doctors, practitioners and nurses at the Mayo Clinic. Especially how they treated me as a partner in my treatment, neither talking down to me nor talking over me. It was all smiles as we said my goodbyes. I'll be visiting again to get scans every 6 months and I am confident that my immune system will take this the rest of the way. Whenever the doctors would say what an average  patient should expect . . . I would remind them that I am a CAPOEIRA. We're anything but average. When cancer attacked, I instinctively reacted with an esquiva* and rôle*. Sou mandingueiro ate o dia que eu morrer**. And that day is not today.

*Capoeira movements, roughly a duck and roll
**I'm a capoeira player until the day that I die

see some famous Mestres define the "undefinable" word mandinga

Best Days Are Ahead

So today is a special day. I would have been scheduled for my 7th chemotherapy treatment. But instead I'll be teaching capoeira tonight. Instead of getting sick again I'll be getting healthier. Instead of trying to endure the side effects of the chemo drugs, I'll be working through muscle soreness as I get back into shape.

On Tuesday, August 17 I met with my primary oncologist to discuss my treatment. As I explained in my previous post, the radiologist had all but given me the green light to skip radiation due to the low probability of local recurrence and the very daunting possibility of permanent damage to my internal organs. For quite some time I have wondered whether 6 months of chemotherapy might also do more damage than good.  Especially now as I was experiencing extreme fatigue and numbness in my fingers and toes. I knew already that the science was more gray than black and white. 6 months had been the standard for decades regardless if the patient had stage 4 cancer or as in my case it was done simply to prevent the return of the cancer. My gut feeling was that any benefit from the chemo had already been realized and returning to some normalcy in my life, especially training capoeira would be a much more effective medicine.

My doctor to his credit responded positively to my decision to stop treatment. He did say that he was confident that the three months of chemo would improve my odds of living cancer free. He also admitted that there is no scientific evidence to say that 6 months is any more effective than 3 months. In fact the Mayo Clinic is currently conducting trials to look specifically at this question. Prior studies have shown that any chemotherapy beyond 6 months gives no added benefit. He also concurred that some studies have indicated that exercise can have a greater effect than chemo in reducing the recurrence of this cancer.

So the decision was made to have my final cycle of chemo on the 20th of August and then quickly pack my bags and make the road trip back to Miami before the worst symptoms kicked in. Luckily Stacey traveled with me as my back up driver. What a crazy summer. It was great getting to spend time with my nephews and nieces. Oh and their parents too who were so gracious to let me stay in their home. I realized that I'm no longer a Minnesota boy. I long for the diversity and hectic schedule of Miami.

So after two weeks I'm back to work, teaching capoeira and feeling better every day. But the most amazing thing is that I won't get sick this weekend. In fact my best days are ahead of me. I don't know if you can understand how wonderful that feels. Next week I'll head back to the Mayo clinic for some blood work, scans and the surgical removal of the port where the chemo was administered. My doctor told me he really didn't need to tell me to eat healthy and get exercise. No, he certainly doesn't. This is what I'm good at. So for the next three months my blog will focus on getting into shape to the hypnotizing sound of my personal trainer, my gunga.

Batizando meu sobrinho . . .

On coding, coping and hoping …

So it's been awhile since my last post and that probably has a lot to do with the fatigue and depression that set in while living on a 2 week cycle of chemo. I wrote this little dialogue to give others a chance to understand what chemo means to me.

Doctor: We think you'll be ok but just to be sure we want you to bang your head against a brick wall for a few months.

Patient: That will help?

Doctor: Well then we can be more sure you'll be ok.

Patient: But what about the headaches and brain damage?

Doctor: We can give you aspirin.

Patient: Thank god for modern medicine.

At my nephew's baptism

As I realized that the fatigue would not allow me to "fight" through the chemo the way that I wanted to, I decided to redirect my energies into re-learning how to program apps. Coding has been a hobby for me since high school and is an excellent way to focus and forget about my symptoms. Of course I am incorporating capoeira into my apps and I will have an exciting announcement soon.

After my fourth cycle of chemo I was still experiencing extended nausea and extreme fatigue. I was also facing 4-5 weeks of radiation in addition to the chemo. My sister Allison went with me to meet the radiologist who, despite being not much older that 16 was extremely knowledgable about my specific case. Because I have a very low probability of local recurrence (5-10%) they are allowing me to forego radiation and it's harmful side effects.

The last remaining hurdle to resuming my life is to meet with my primary oncologist and discuss how much more chemo is necessary. The normal regime is 12 cycles (6 mos.) though I am convinced that getting back in shape, eating healthy and capoeira will be more beneficial than additional chemo. More about this in my next post ...

Injecting myself through the port

So according to my sister Catharine, the best medicine I've received was the arrival of Stacey, my best friend and partner in crime. When you're an old, grumpy curmudgeon you don't really like to admit that you need anyone. But then you go and get cancer and you realize it's really nice not to be alone in this world. So without getting sentimental, let me just say how much my family, my son and my extended capoeira family have meant to me. But there is something special about that one special someone that knows your dark side and still loves you. I feel extremely appreciative.

A lighter moment at the movies

Great Expectations …

So this cycle (my third) of chemotherapy began with great expectations. I'm now up to 6 different anti-nausea medications and guinea hen weed tea from Jamaica thanks to Stacey's mum. I'm happy to say that I made it through the week without vomiting. Unfortunately my nausea and lack of appetite seemed to last a few days longer. I guess it's a trade-off. I also welcomed a new symptom, fatigue. I didn't recognize it at first. Just thought I was lazy, but then all attempts to battle my laziness failed. With it I am losing weight and muscle. NOT a happy camper.

anti-nausea medication

anti-nausea pills

I was able to visit a capoeira group near Minneapolis on Tuesday (day six) and even able to play in the roda although I found myself nearly blacking out after a minimum of exertion. One student there, a nurse, was quite worried that I was playing with my surgically implanted port, but I assured her that I would stay out of knife fights and play with caution.

Visiting Capoeira Omulu near Minneapolis

After capoeira I took Marcello to see my childhood home and elementary school. Of course he was ecstatic. <insert sarcasm here> but he did enjoy the pan pizza at my old college hangout, Green Mill.

my childhood home in the St. Paul suburb of Maplewood.

having the "famous" green mill pan pizza in St. Paul with my son

So as I prepare for cycle 4 and the prospect of more fatigue, I've had to tamper my great expectations. I'm making a plan for a very simple exercise routine that I may be able to do even during the darkest days. A few pull-ups, a few push ups, some jump rope, walking. It's not what I had hoped for, but realizing this is a temporary situation, I want to avoid losing any more weight or any more muscle. Hoping for the best, but hankering down for the storm ahead.

Home Sweet Home …

A few pounds lighter, but happy to be at the beach!

So for my "good" week I was able to fly back to Miami and that meant lots of capoeira. And finally I can answer the question of how much will I be able to train while on chemo. Join me in a look back at the week and you can decide . . .

Back teaching my class on Thursday and schooling my students in the roda.

Hanging out with the UCA crew at their Friday Roda.

Posing after a great Saturday class and roda at the Cordão de Ouro Academy!

Spent the evening of the fourth with my old friend Hector on Hollywood Beach.

Dinorá is doing a great job teaching classes. Here she is leading the Sunday class.

#sundayselfie is the new "thing".

What better place to see Jurassic World IMAX than a Science Museum. Oh and with my favorite person ;)

Great turnout and six different capoeira groups for my final roda before returning to Mayo Clinic. What Axé!

Teaching my song "Capoeira é Superação" before the roda.

Remembering Instructor Venom, 4 months after his tragic death :(

Great to finally meet my capoeira grand-daughter, Aritaninha.

And finally, this is chemotherapy on Capoeira . . .

Good days and bad days …

A good day back in Miami

So it turns out that chemo is all about good days vs. bad ones. For those of you who don't know I was diagnosed with colorectal cancer in March and after surgery and recovery I'm reluctantly partaking in chemo treatments as a "preventative" strategy to decrease the chances of the cancer returning. Although all indications are that the cancer has not spread, this is a particularly malignant cancer and if it returns it's all but lights out.

As a capoeirista of twenty years I was particularly interested (concerned) about how chemotherapy and having a port surgically implanted would affect my ability to do what I most love. As I couldn't find adequate information from my doctors or online I am using my experience and this blog to maybe offer an insight to others who find themselves in this situation. I'm receiving treatment at the Mayo Clinic in Rochester, MN where my sister Catharine has been so kind as to invite me into her ever expanding family. This week, however I'm back home in Miami and will have a moment to reflect on my experience.

My chemo comes in two week cycles. Currently I have received two treatments. It begins Thursday with two hours in the hospital receiving Oxaliplatin, a platinum-based (yes the rare heavy metal) chemical that has cummulative side effects that begin with cold sensitivity and can eventually lead to permanent nerve damage. I will discontinue this one if I begin to experience the more severe effects. So far the cold sensitivity is uncomfortable at most and results in having to drink warm water to hydrate. After the Oxaliplatin I get a quick dose of Fluorouracil, affectionately known as 5FU (no I couldn't make that up). This Flouride based chemical attacks my cells as they divide so quick replacing cells such as those in the gastrointestinal system suffer most. More on that later.

The key to making 5FU effective is to attack the cancer cells when they replicate. Because timing is everything, they are kind enough to attach a mobile pump through my port and I get to continue receiving 5FU for 46 hours after I leave the hospital. I should mention that prior to beginning the infusions they give me oral meds to help push back the nausea. These meds wear off about the time the pump delivers the last of its precious cargo. That's when the bad days begin.

On Saturday I remove the pump after injecting myself with saline and heparin, a blood thinner. Quite proud that I can do that all myself. I'll have to video it next time. The nausea begins a day earlier but the special time I call "riding the vomit comet" usually begins on day three. This is when I spend three days in my sister's basement sleeping for an hour or two and then vomiting. Rinse and repeat. It seems when this is happening that it will never end. Only tea gives me comfort as throwing up tea is much preferred to stomach acid alone. For the second cycle the Oncologist team recommended an additional nausea medication and an increase in the initial oral meds. It did lead to less vomiting overall but not to a decrease in the most important indicator, the number of bad days.

So on day 5, also known as day three on the vomit calendar I begin to have brief but important cravings for food. Usually it involves bacon and it's important to act on it immediately as overwhelming nausea can ruin such visions of grandeur. I learned a valuable lesson the first time this happened. One must not prepare ones own food. Although I like being independent, I've had to allow others to make my food. The chemo causes me to have extra-sensory olfactory abilities which make even tap water smell horrible. By the time I prepare my own food I am sick from the smell of well just about everything and quickly return to my dungeon sanctuary unable to eat it.

Day six, although not a good day is when I can begin to eat. It's important to get calories so I don't lose too much weight. After not eating for 3-4 days it becomes a race to put on weight before the next cycle begins. Unfortunately my mouth is one of those areas where cells are destroyed. Some foods now taste like chalk and even my Dunkin Donut tasted like licking sugar out of an ashtray or so I imagine. But eating is important and with food comes energy and a return to normal activity. By normal activity I of course mean normal for a capoeira.

Which leads to my central concern. How about capoeira and how about staying in shape. How good are the good days? Let me just say that though I have been able to workout, I must admit a level of disappointment. It seems that fatigue is nausea's younger brother. A walk may leave me exhausted. A two mile run left me itching all over and with uncharacteristicly sore muscles. And yet each day it improves. Also It's been difficult being in Rochester and not having a capoeira community close by. Capoeira is my closest confidante and my psychologist of first resort. This week in Miami I am looking forward to training and playing as much as my body is able. My goal after all is not to just live, but to do it kicking ass.

So what's the final tally? I'll say 5 good days, 2 so-so days and 7 progressively getting better days until it all begins again. To put things in perspective, if you are not vomiting then you should consider it a good day. Here's hoping you make it a great one.

This is Professor Alemão Superação signing off. Até a próxima roda …

#capoeirastrong #superacao #micobymyside

Chemo Is No Joke!

So just a quick post. After 2 good days almost symptom free and the removal of the pump filling me with drugs, I've had 48 hours of misery. The first 36 vomiting every hour or two and the last twelve with extreme nausea and fatigue. I can only hope for some relief tomorrow. All I have to say is that chemo is no joke!

Surviving Chemo Day One, Day Won.

Receiving chemo drugs at the Mayo Clinic this morning

No complications. Only hope they all go this well. Left with a big appetite which is good and oh . . . this contraption which is a pump to continue the chemo for another 48 hours.

Not a man purse. Not a "fanny pack". This could save my life.

Oh and best of all it allows me to begin light workouts. 20 pull ups for starters. Going for a walk and then I'll try some bicep curls later. Tired of these stick arms. Lol. 

#capoeirastrong 

Road Trip

Just arrived in MN after a two day, 1800 mile road trip with my son. Chemo begins tomorrow.

Testing out my chemo port . . .

… so it's 4 days after the port was installed and the pain has subsided. I thought I would try some basic capoeira moves and take it for a spin.

Tomorrow I head back to Minnesota where I'll get my first chemotherapy treatment on Thursday. Yippie!

This is the port for the chemo drugs #healing

Capoeira, Cancer and Chemotherapy

trying to escape hospital after surgery

So a lot has happened since I last posted here. In March of this year I was diagnosed with colorectal cancer. Three weeks after my diagnosis I underwent surgery to remove the cancer. Luckily, the testing indicated that the cancer had not spread. However as the cancer is a very malignant type the recommendation was chemotherapy and radiation.

playing capoeira 8 weeks after surgery in Orlando, FL

Concerned with my quality of life and my ability to continue teaching and playing capoeira, I researched carefully the benefits and dangers of chemotherapy. I have been convinced by doctors and more importantly family that my best chance for preventing the cancer's return is to begin aggressive chemotherapy. Thanks to my sister Catharine, I have been able to come to Rochester, MN for the summer to receive my treatment at the Mayo Clinic. Just yesterday I began the process by having a port surgically inserted under my skin. This will be used to administer the chemotherapy more effectively.

port used to administer chemo

In researching how chemotherapy will affect my ability to train capoeira, I was unable to find anything posted online. For this reason I have decided to post here about my experiences in the hope that in the future someone will find this helpful. I am a very private person, but having a very public persona as a professor of capoeira means that others may wish to follow my story. All I can report so far is that the surgery to implant the port was fairly simple. There is pain and discomfort afterwards, but no need for pain medication.

I begin chemotherapy treatments next week after a cross country road trip with my son. I'm hoping to continue teaching and training capoeira as much as possible. #capoeirastrong #superação