Thursday, June 28, 2012

Let's get to zapping ........

So following the "not so awesome" news of the Pet Scan results last week it seemed very appropriate to have a "Weekend of Denial" with my Hakipu'u 'ohana and friends. 
Needless to say it was a much over due PERFECT WEEKEND spent on the water and enjoying everyone's company at "Sweet Home Hakipu'u"

Figure I'd let the photos do the talking~~~! Mahalo to Steph and Momi for capturing the weekend in photos! It was nice to be in front of the camera instead of behind it all weekend.
I already got asked plenty about that "big lump" on my right chest....its not a tumor (or a goiter - Alex!!) that is my Port, where they stick the needle in to draw blood, hook me up for chemo/fluid infusions etc plans to take it out anytime soon. So was the perfect way to put "reality" aside for a while and it was a huge SUCCESS!!!

Physically I been doing plenty better, less fatigue, increased strength (although the weekend wiped my ass out!!)
Been managing the pain better, no more narcotics, just mostly the neurontin and lidocaine patches to my lower back...going try some acupunture and lomi lomi in the next week. Saw the foot specialist about my infected big toe.....he seemed happy with my nursing skills and didn't feel the need to remove the entire nail ("yet").... was big kine suprise when he started cut away 1/3 of the nail with scissors and I realize I didn't feel it......guess I been having some pretty good peripheral neuropathy to my toes but never realize it.
The foot doc does not thing the infection was from the pedicure Kolea took me to , he thinks I prolly rammed something up under the nail and never felt/realize it.
Either way gotta give it a few ore days for see if pus stops and if starts looking better, or else gotta go back and have the whole nail removed......I keep thinking since I get no feelings there anyways a bottle of Jaeger and a good pair of surgical scissors can do myself......foot doc said he did not recommend the pliers trick!

Soooooo Reality came crashing back down this past Tuesday

I didn't get to do my sunrise walk down to Mokoli'i since my appointment was so early.....and was put at ease when I walked into the exam room and there was a painting of "my early morning walk spot" hanging on  the wall.
I met with my new Radiation Oncologist, she super cool, seems up on her game, she and the staff made me super comfortable. She took the time to sit and talk with me and answer ALL of my questions.....and you know I had plenty!!
I did have "the rug pulled out from under me" a bit during our discussion.....basically .... like we knew everyone is very concerned about the areas of active cancer in the center of my chest, despite having been through my 6 rounds of chemo. Big concer is that they will spread the cancer around again as fast as they did back in no one wants wait too long to get radiation started. I did ask what alternatives to the radiation I had.....basically.....the only alternative at this point would be a different chemo regimen, but I had to agree when she said it would be stupid to go there now.......since that is the biggest and last (except for stem cell transplant) "gun" in our "arsenal" and if we use it now and it does not work , we are left with nothing.......that was a big fat dose of shitty reality right there......
I was SHOCKED first when she told me plan was radiate for 5x a week (monday-friday) for 5 weeks...I had been planning on 4 weeks, then when she explained the plan is to radiate me basically from my neck to the lower part of my ribs on both sides I was even more shocked........I just assumed we would just be pointing the big beam right athe the last few shitheads remaining in the center of my chest and blast them away like the old Space Invaders game........
The reasoning behind radiation to the entire chest is that there is a big concern that since there is evidence of active disease present in the center of my chest that there is a good chance of microscopic disease activity in all the spots where we previously saw the lymphomas, these microscopic areas wold not show up on scans at this point.

My biggest concern about the radiation has always been the potential for damage that can be caused to the surrounding tissue, for me the biggest of my concerns is my heart.....there is no way any of this would be worth it if I were to wind up with heart damage that left me physically stunted and having to spend the rest of my life "on sidelines" watching others......I would rather be dead.
Was a huge wake up call when she started talking about the potential for damage to heart, lungs, larynx and spinal column.......blew my mind!!!!
She then went on to explain that I will be getting not conventional radiation...the kine where they shoot a big beam right through you front to back...but rather I am lucky to have access to "state of the art" modern radiation - INTENSITY-MODULATED RADIATION THERAPY (IMRT)

IMRT is an advanced mode of high-precision radiotherapy that uses computer controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. IMRT allows for the radiation dose to conform more precisely to the three dimensional shape of the tumors  buy modulation - or controlling- the intensity of the radiation beam in multiple small volumes.
IMRT also allows higher radiation doses, the plan is that I will be getting the maximum, to be focused to regions withing the tumor while minimizing the dose to surrounding normal critical structures (my heart, lung, larynx and spinal column).
They will match a CT up with my PetScan and with computerized calculations determine the dose intensity pattern that will best conform to each of my tumor shapes, or the areas they will be radiating.
Soooo basically it comes down to a combination of multiple intensity-modulated fields coming from different beam directions to produce custom tailored radiation doses that maximize tumor dose while minimizing the dose to adjacent normal tissue.
Radiation Therapies, including IMRT, stop cancer cells from dividing and growing, thus slowing or stopping tumor growth. Plenty cases radiation therapy has been shown capable of killing all of the cancer cells and shrinking or eliminating tumors.
Now we going DEEP into my new knowledge of radiation.....
The Equipment they going to use:
A medical linear accelerator (LINAC) generates the photons used in IMRT. The machine is the size of a small car. The energy of the photon in the order of 10 millions volts is generated to penetrate the body to the tumor(s). During 15 minutes or so of treatment (Yes I will be driving 45 minutes one way for a 15 minute treatment 5x a week for 5 weeks = SUCKFEST) I will have to lie still while the linear accelerator delivers multiple beams of radiation into me from various directions. I will need a special mold/brace constructed that will harness my head/neck to help ensure I am in the exact same treatment position everyday. Will also get semi permanent tattoo's marking areas on my chest ( I plan to have those turned into permanent tat's once this is all over.....a good way to document my journey) 
I shouldn't feel anything while getting the radiation treatment. Just gotta be in the noisy room alone.

My Radiation Oncologist says biggest side effect I have to look forward to will prolly hit right around 2/3 way through treatment and that is Esophagitis - inflammation/swelling and sores in my esophagus....should be spending plenty time at Lanikai Juice downing protein shakes.....KAILUA MONKEYS ALL DAY EVERYDAY!!!
the other "text book side effects"

The early ones occur during of immediately pau treatment and are typically gone in a few weeks are tiredness/fatigue (now that I am just getting over the chemo fatigue) and skin problems. Skin in the treated radiated area can become more sensitive, red , irritated yaddah yaddah yaddah.....Radiation Onco says I will prolly get real brown on my chest but it will fade.....and I will have to keep my skin out the sun!!

The late side effects (which are rare) can wait to show up till months or years following treatment and these are usually permanent......
Brain changes (got that covered already with my chemo brain), spinal cord changes, lung changes, infertility, lymphedema (cause my lymph nodes dont got enough worries) and the one I always like the best.....
(insert drum roll please)
didn't they already warn me the chemo I got could cause secondary cancer........SERIOUSLY?!?!?!?!
C'mon folks your killing me (no pun intended)

"ONE FOOT IN FRONT OF THE OTHER" .....right?!?!?!
After meeting with the Radiation Team I got home and decided I needed my daily walk bad so did it in the evening....
NO painting hanging on a wall can ever compare to the real deal!!!

So tomorrow I head in for my "staging" appointment.....get my "headgear" (all I can think is Joan Cusack in 16 Candles - anyone got a poodle sweater I can borrow??), get my tatoo-ing (not the ink job I was planning) and lay still for a while so they can calibrate the machine to my specifics.....prolly a good idea for me to bring a few "nursing doses" of some of my "special relaxing pills" ......have you ever seen my try sit/lie still for a long period.....
Then Monday we start the 5 weeks of zapping....

According to my regular oncologist we will have to wait almost 2 months before doing follow up scans to see how the cancer responded to the radiation.......that's going to be a loooooong 2 months and I think prolly a good time to plan a trip!!!! 

For now its one day at a time....

I hope this helped answer all the questions that have been circling......radiation is very very new to me , it is something that I have never experienced first hand with any of my patients. Remember in the beginning of this shit storm when I talked about being "lucky" not to be full of anxiety facing the unknown of chemotherapy because I have seen if first hand through out my 16 yrs as a nurse....... well I went bachi I find myself FULL OF ANXIETY AND FEARS.

As always A MILLION MAHALOS to all of you for you unwavering love, support, caring and generosity.....I too thought for sure this would all be pau following chemo......but guess I got some more "life lessons" to learn on this journey.
I am so very appreciative to all of you who have reached out to me to let me know my little blog has helped give some of you better insight or shed light on some of what your loved ones may have or might be experiencing......that was never my intent here (actually I not really sure what my intent was with this blog) but if my sharing my story unfiltered, uncensored and honestly helps even one person or the family/loved one of one person facing/dealing with/ battling cancer......then I am TRULY BLESSED!!!




  1. Dear Patrick,

    I've been following your blog and just want to tell you, if you need any help with rides, shopping, or anything else please let me know. You are amazing and have such an amazing attitude through all this. Don't feel you have to go it alone, ever. I would love to lend a hand. Linda Suzuki

  2. Btw, I'm a friend of Leilani Huybrechts.