Saturday funday

 

Are you happy to see me or is that just a portacath bulging out of your chest? I am getting used to my alien probe portacath thing - it's over an inch wide, it sits under my skin about an inch under the midline of my right side collar bone. So far it's very sore but kind of cool in a super creepy goth way. Getting better every day. I can feel it with my fingers. They say if you are very thin it really shows - apparently I am well upholstered enough in these regions for it to pass rather imperceptibly.

 

I found this video which I think gives a good example of what it's like to be "accessed" which sounds so clinical - what really happens is that a stranger stabs you while you smile and sit still... Well anyway - this video gives the best example of how these portable cath things work that I have seen so far. I admit I have not watched more than a few hours of these videos so maybe lurking out there is a better one. Under the skin lives this little triangular port, and the nurse sticks a curved needle into it through the skin - like a fishhook. Once they hook you - they draw out blood and push in saline and stuff - back and forth back and forth, etc...on and on - then connect you to a giant IV that drips the poison in over 3-4-5 hours. So here is that vid - featuring a much cuter patient than the one you know:

 

 

If this little kid can do it then I can FOR SURE. It's no big deal. I think he is adorable.

 

Modern doctor communication has improved: My doctor is Allison Gorrebeeck and she is wonderful. So wonderful that I can actually email her questions and she will actually email me back (my mom and dad are rolling in their graves, pigs are flying, the world may be coming to an end), which I find extraordinary and extremely helpful. Here are some questions and her answers from a day or so ago:

 ME: I've been reading and studying up on my diagnosis as best as I can - I love to learn and want to be informed. A few things still puzzle me and I'd love your explanation. My path report showed a ki67 score of 9% which indicates NOT rapid cancer cell division. Some chemo drugs specifically and only target rapidly dividing cells. So do you think that this score does not probably actually reflect all potential cancer cells in my body? Or maybe cells sometimes divide fast and sometimes slow and one path report is a snapshot in time? 

DR G: Yes, we realize that the ki67% is low but the tumor was multifocal and involved nodes so we suspect it is heterogenous and may have some more aggressive cells.  The ki67% is somewhat subjective.

ME: How will you measure the effectiveness of the chemo? Since there isn't a big tumor to watch shrink what are the measurement metrics?

DR G: In post-op chemo there is no measure of effectiveness because we don’t have a tumor to follow.  This is all preventative in a way.  If you are still in my cured club 20 years from now, then we will know it worked!  (And you will be)

ME: I read in a book by Dr. John Link that the drug class of anthracyclines (doxorubicin, Adriamycin, epirubicin) are minimally beneficial and very toxic so the current procedure is an alkalizing agent (cyclophosphamide, Cytoxan) and a taxane w or w/o Adriamycin but now "we believe there's enough evidence against Adriamycin that we do not recommend it." I don't know how credible he is for this or information is extremely current or not. Or the context of course. 

DR G: I think we could consider treating you without anthracyclines (adriamycin).  The standard still is usually that if you have node involvement we use adriamycin because that’s the science we have.  We do have very good science in lymph node negative tumors that taxotere and cytoxan without adriamycin is adequate.  Given that both of your lymph nodes are microscopic metastasis, I am willing to treat with TC only as long as you understand that I can’t quote scientific studies exactly in that setting.  I have done this many times when patient desires to avoid adriamycin.  I think this is the way chemotherapy is headed in the future. You should make appointment to come in and we discuss more thoroughly to make sure we are both on same page about your treatment.

 

What to do? What to do? What? To? Do? Shall I have the red poison cocktail? Skip the A? Or eat it?

 

 

Neighbors and friends I thank you! I have received lots of yummy food lately - we are full up and getting fatter my the moment! When chemo starts in a few weeks I may put up some kind of a care calendar thing. Thank you guys for the King Ranch chicken, the lemon grass soup, the chicken tortilla soup, the roast pork, the fruit salad. Jenna Susan Mona Leila Terry Tina Stan Katie. Here I am in fresh-n-tasty HK T from Tina. Thanks dude.

 

                   

 

 

 

 

 

 

 

 

 

 

 

 

 

Your Catfish Friend  

by Richard Brautigan 

If I were to live my life

in catfish forms

in scaffolds of skin and whiskers

at the bottom of a pond

and you were to come by

   one evening

when the moon was shining

down into my dark home

and stand there at the edge

   of my affection

and think, "It's beautiful

here by this pond.  I wish

   somebody loved me,"

I'd love you and be your catfish

friend and drive such lonely

thoughts from your mind

and suddenly you would be

   at peace,

and ask yourself, "I wonder

if there are any catfish

in this pond?  It seems like

a perfect place for them."

 

 

We're drinkin
We're laughin
We're eatin
It's all ok