Have gone further and further on my sunrise walks.......so amazing the beauty I see each day, every morning is a different show......
......have I mentioned how blessed I feel to be living where I do...........
So quick update for last few days........ the hair loss came fast....small kine nubbins left on my head right now.....as far as can tell it is not recommended for me to be shaving my head with a razor.....not really sure where my platelet count is........the hair loss is the first time I have noticed myself making "bargains".....kinda went something like this...
"Dear god(dess) of hair follicle, Saint Alopecia....who ever is listening.....You've got the hair off my head, stole the hair off my kinipopo.....PLEASE LET ME HAVE MY EYEBROWS!!!! I will offer you up the hair on my legs, the hair on my arms, the rest of the hair anywhere PLEASE LEAVE MY EYEBROWS INTACT!!!"
Ohhhhh and while I got your attention WTF is up with the hair up my nose and in my ears?!?!?! Not good enough for you??? Noticed you haven't gone anywhere near those spots!!!!
See I am coming to terms with my bolo head.....still not going out with out a hat on....building a big selection of skull caps.....not taking pics yet.........Hair today gone tomorrow...ha ha ha ....Whatevahs - I'm still friggin salty!!
I did receive an amazing t-shirt in the mail (been receiving all kinds amazing, fun, yummy gifts from post man).....it is my "Chemo infusion" costume....
(now I just need Kamakana's cape and I'm good for go)
Thank you Stacy....LOVE IT!!
Rest of the week I have been feeling stronger and stronger, spending more time meditating, doing visualization exercise and affirmations. Trying to ignore all the state health insurance bullshit....that's mostly cause my "pit bull" is down with the flu and I have vowed to have not conversation with those folks myself........5 minutes with them and I'm grabbing for percocets, valiums and supplemental oxygen.......
Looks like I will be getting some time on the water tomorrow.....for sure exactly what I need to bring things full circle and prep me for Monday....
Been 32 days since I have been out on one of the sailing canoes and every part of me down to the core is screaming for water time.......
Mahalo Nakoa....brother, friend, captain, mentor, teacher.....mahalo for trusting in me!!
Going have to make the most of the good days when they come right!!!!!
OKIE ......I know quit dawdling and lets get this friggin blog caught up to date:
Lets talk MEDICAL: Last we talked my diagnosis was 6cm mediastinal mass= Hodgkins Lymphoma......little blebs/masses scattered around my chest = Non-Hodkins Lymphoma......
Confusing I know.....so my biopsy was sent off to Stanford for a "second opinion" on the pathology....NOW things get confusing, bear with me.....there is something called a CD15 marker that is a carbohydrate (not a protein) that is widely used for diagnosis of Hodgkin's lymphoma.
For pathologists/health care workers it is ● Membranous, diffuse cytoplasmic or Golgi staining of Reed-Sternberg cells in Hodgkin’s lymphoma; CD15 staining is used to confirm diagnosis, or to differentiate Hodgkin's lymphoma (CD15+) from anaplastic large cell lymphoma (usually CD15 negative)........still with me??
Specimen pathology according to Queens Hospital is CD15 POSITIVE
Specimen pathology according to Stanford is CD15 NEGATIVE
NO SHIT THEY WENT THROW A WRENCH INTO EVERYTHING.....
So after a long talk....it would make more sense that it tested CD15 (-) that means it is all Large Diffuse B-Cell (non-Hodkins Lymphoma) and that I do not have 2 cancers, but we just really don't know. At this point only way to know 100% would be to get a surgical biopsy of "Bob" (mediastinal mass)......but that would be a risky, painful long recovery surgery and at this point the benefits DO NOT out weigh the risks for me.
THIRD OPINION????? YA I went there rite away too.....basically the course of treatment that we agreed to with (CHOP-R) was picked to go after the non-hodgkins lymphoma first as it is the more aggressive of the 2 lymphomas with the hopes of it having some effects on the Hodkins Lymphoma as well.
So, getting another opinion at this point kinda pointless as none of the treatment plan has or will at this point change......I will be going in for CHOP-R Round 2 on Monday.....after that we will get a follow up PETSCAN and that will show us what effect the chemo is having on the cancer(s).....if need decisions (3rd opinions) can happen after we see the results.
So basically "COME ON CHEMOTHERAPY........ME AND YOU GOT A WHOLE LOT OF WORK TO DO ON MONDAY AND THE WEEKS FOLLOWING!!!!
The one potential change actually could be decision to go back to chemo every 3 weeks instead of every 2 weeks. this would allow my body the chance to recover a bit more before we kick it down again.......after how I am feeling this week I would welcome that change.....I can handle a week or so of pure straight up hell if I knew I could have a week or even a few days feeling like this before the next round..........
They said I would be the first to notice any changes in the cancer(s) sizes and growth........at this point my tracheal/esophageal deviation has not improved, the node that they biopsied just below my left clavicle seems to be growing rapidly, BOB hasn't seemed to do much of anything.......so again....gotta get my shit together team up with my chemo on Monday and kick the shit out of Neil and Bob....so when they do my PETSCAN they will see shrinkage and tell me everything I was feeling is just one more sign that I need a "SHRINK" ha ha ha ha!!!!
So that's the medical update........and the end of my blogging for today, going to enjoy a nice dinner, a movie and rest good tonight so I don't disappoint myself when time get out on the water tomorrow!!!
Lessons learned this week:-I am beyond blessed to be loved, cared for, cared about, supported by so much wonderful family and friends.....truly one of the luckiest folks on this planet!!!!
-I no longer can eat out.....price to pay is too high (and takes too much time out of my day) meals need be cooked at home.
-Meals prepared lovingly by other folks taste way better and I am sure have more healing properties than anything I could fix for myself ;) Mahalo Kehau(2), Terry and Nakoa, Kolea!!!
-My body has no interest in over doing the adult beverages ....one to two glasses of wine or couple beers and I'm pau........SHOCKING I KNOW!!!!!
-Meditation, Guided Imagery, Affirmations will be of great use to me at this time in my life.-I still react like a yr old when the postman brings a package to the door.
-This blog spot has spell check
-THE DEVIL IS IN CHARGE OF STATE MEDICAL INSURANCE PROGRAMS.......more about where that is all at in tomorrows blog.....
Lets end this one on a positive note sharing a bit of the amazing beauty I was blessed to be a part of this morning:
Affirmation that stuck today: "I thank my body for teaching me to always remember the beauty of my own being. More and more I know that when I can LOVE and APPRECIATE myself. Take time to CARE for myself.......I am fortifying my immune system and giving my body a powerful message to be well."
LOTS OF LOVE AND ALOHA TO YOU ALL