Tuesday, March 6, 2012

No rainbows without rain....

Been raining for days on end....I'm not taking little rain here and there ....talking pouring, thunder, lightning, yard under 2 inches of water rain.....I been feeling pretty shitty and spending most time in bed or sofa surfing, so not too bad for me since I don't gotta be no where.  Suck thing is I gotta keep telling folks not to come visit because all the flooding....

My "expected" NADIR was yesterday (one week after Chemo Round #2).....this one showed up a little early.....felt it coming on strong Saturday night into Sunday.....had a few good days after chemo and a extra special day on Saturday......went down to Aina Haina and spent some time with the kids....
They were pretty stoked to see me....we had to keep it a surprise, never like get their hopes up and then I don't feel good or something comes up and I'm no show....

Micaiah  right away had to go put jeans on...I guess so could continue the history of my "mini me".......right away he grabbed the box of card games we always played and it was game on like old times......he seemed pretty unfazed by my bolo head....even made a few cracks about it (HE is the ONLY one with permission to make bolo head cracks!!)....

At one point telling me I looked like "Megamind, except I wasn't blue and I'm no bad guy"......funniest was him playing the eye spy game with his grandma and I hear him say "I spy something BALD!!!" LOVE that kid!!

Was for sure the perfect medicine spending the afternoon with them. These are my nephews Kamakana and Micaiah , my Niece Sarai.
Kamakana spent most of the afternoon napping, he wasn't feeling good. But, he was wide awake when time for me to leave (of course).....and I was thankful to have some of "our special moments" together. He was alert, focused right on me, mouth going (had his art-nose on so couldn't verbalize), breathing going......and listening to what I had to say.......I was extra thankful for this time with him as today, March 6, is the the day 5 years ago that we met in the PICU after his accident.
What an amazing 5 years it has been.....this boy has taught all of us so much....most of all BELIEVE!!
Along with him I was blessed with an amazing hanai 'ohana -brothers, sisters, nieces and nephews (seems like hundreds at this point) and of course "gramma great" I am thankful for all of them in so many different ways.
His coming into my life opened up so much of this world to me and it is in his honor that my photography business is named "KAMAKANA IMAGES"

Today family and friends will be gathering to celebrate Kamakana's Rebirthday....something we have done every year on the anniversary of his accident to celebrate his life rather than focus on the tragedy that almost took his life.......because of my "nadir situation" this I will not be able to be there in person but am there with my heart and spirit.

So, like I said earlier my nadir showed a bit early this time....was expecting it Monday ...had the "rug pulled out from under me" Sunday.......
Every cancer patients  response/experience to their chemo is different.....there are the expected -hair loss- nausea-vomiting-diarrhea.....stuffs that seems we all far I have been LUCKY....
My "expected" side effects have been manageable and seemed to go hand in hand with my chemo infusion and for about 24 hrs after. (and YES I STILL HAVE MY EYEBROWS)......
I am going to do my best to share with you MY Post chemo round #2 some of you have called, emailed, messaged trying to get a better understanding....
For me when my nadir hit I again felt as if I had turned ancient on the inside.....some of this may have been coming down off the steroids.....the high dose steroids do give a "false feeling" of wellness.....for me they AMP me up.....lots of nervous energies.....brain racing with thoughts/hard to focus.....
Sunday I just started feeling tired and like I was trapped inside/dragging around a I listened to my body and slept the majority of the day....
Monday the fatigue was increasing and with it came the sore back, sore joints, headaches and just plain feeling like SHIT!!! Hard to describe the pain....its a pain that settles all the way into your bones, I am aware of every joint on my's the back pain that comes on like someone just hit me with a bat ( seems this is a common side effect of my chemo regimen, but at this point not one anyone can pinpoint a cause of....spoke with plenty other folks who experience(d) same thing)
I realized early on in this the importance of at least independently doing my ADL' no matter how shit I feel I get up in the morning make the bed, shower, exercise (although my sunrise walks have been stolen by mother nature this week) clean the house, make meals for the day.....amazing how the "trivial stuffs that I would never have given a second thought in the past have become major accomplishments now.
By today it's kinda all I can do to get up from the bed and move to the some of you probably seen on Facebook , I been occupying myself by going through pics and taking a fun trip down "memory lanes".....good for my spirit.
This afternoon "being tired" took on a whole new meaning for me when the simple task of changing the bed linens took me about 20 minutes and left me with labored breathing, nasty headache and room spinning.
Not sure if BOB is acting up because the Neils is "on da run" or if its just my chemo buddies going at him hard ....I am so aware of his presence in my chest and playing games with my trachea/esophagus....taking time to focus my energies on him to get my body in sync with the chemo as it is working OT right now....but still gotta keep some focus on the Neils make sure they go  and STAY GONE.....I know there were questions about what I blogged last time regarding the CT is the lymph nodes we were talking about that are shrinking/returning to normal.... 

Non-Hodgkin lymphoma, is cancer that originates in your lymphatic system, the disease-fighting network spread throughout your body. In non-Hodgkin's lymphoma, tumors develop from lymphocytes — a type of white blood cell. Lymphomas present as a solid tumor of lymphoid cells.
So what we see is my lymph nodes far as tumor response/shrinkage/ will be the Pet-Scan done following Chemo round #6 that will give us the answers on that.
I hope this helps clarify what I was relaying about the CT.....don't get me wrong...VERY REASSURING NEWS.....but there is still a lot of work to be done......and do it WE WILL!!
One of the hardest things so far with round #2 has been the mental/psychological effects.....the coming down off the steroid induce euphoria SUCKS ASS....I am not sure if I am really already experiencing "chemo brain" but I have noticed myself being a little more "forgetful" and my emotions change without warning or reason.....can be perfectly fine one minute then its full on anxiety the next, or I find myself just crying for no reason (yea I have plenty good reasons to cry and I set aside time for that) these are short little crying spurts.....other times I find myself so frustrated and angry for no reason.....I am sure a lot of this is just the process of dealing with doesn't help to be "trapped" inside because of the weather....wishing I was out doing the things I enjoy, having to avoid crowded places......for sure one of the hardest is watching Nakoa across the yard working so hard to get the new canoe "Kaau Moana" built and completed

.....this is the one I was all set to apprentice on and it FUCKING PISSES ME OFF THAT THE OPPORTUNITY WAS STOLEN FROM ME!!!
(ya ya I know there will be more opportunity.....for now let me just own being fucking pissed off).

For sure the weather has been tuff to deal with no walks on the beach, no sitting out in the sun for a little bit......afraid to even get close to the shoreline water cause of all the brown water shit floating around the island...but like everything else it'll all pass and the sun will be out again and SO WILL I.

I am so thankful to have so many folks checking in on me. I have never been much of a phone talker and theses days short conversations get me winded pretty I am so thankful for facebook, emails and all this new technology that allows me to stay in contact with everyone near and to see what everyone is up to via FB. Looking forward to the weather clearing so can spend time with some of you in person.

Big goal once I get past this nadir "hurdle" is to get out there with my camera....not sure what happened but since all this cancer crap showed on my front door I have lost my desire to photograph....not sure what it first it for sure was that the world just looked different and ugly to me.....I got passed that pretty quick (have you seen where I live??) I don't know whats blocking me but time is coming to grab the gear and get back out there......have seen a lot of different spots of most of the islands...but was having a conversation other day and realized still so much of O'ahu for me to explore.....

Alrighty time for my "pre dinner nap".....see you all soon

After the rain, things will be changed;
everything on earth seems to be new
and clean. With this  renewed scenario,
we should be:

- a more positive and courageous person
as indicated by the RED of the rainbow;

- a creative, thoughtful and joyful person
as indicated by the ORANGE of the rainbow;

- an intelligent, confident and logical person as
indicated by the YELLOW of the rainbow;

- a renewed, generous and practical person as
indicated by the GREEN of the rainbow;

- a peaceful, sincere and responsible person as
indicated by the BLUE of the rainbow;

- a relaxed, devoted and wise person as
indicated by the INDIGO of the rainbow;

and last but not least, a spiritual and idealistic
person as indicated by the VIOLET of the rainbow.

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