Q & A

A day to clarify.  We have received some specific questions a couple of times, so that probably means I have not been so clear or "on-message".  This is the "Clarification".  


Issue #1   A lot of you have mentioned that this blog page will not let you "comment" on it -- and I am really sorry here folks, but you are asking the wrong questions to the wrong technological-moron here -- I really don't have a clue. I'm the person that cannot even get a disc to play in this computer because it says it has  "Media" issues.  Well, I have media issues too, but apparently the computer warning has nothing to do with tv announcers..... 

If you happened to see what I actually do to work around some of the things I don't understand about this whole blog thing, it might make you laugh for like 3 hours.  Or 3 weeks.  I'm sorry, but please feel free to keep communicating any other way you can - we literally breathe it in - the notes, the messages, the songs, the words - it's all whispers of healing in our ears - especially on some of the bad days.  (you might note, I did figure out how to "italicize" in blog world and how to upload or embed a picture, although each time I forget and it is a whole new experience)    

Issue #2  Some of you have noted that you are unsure of my diagnosis, etc, and after looking back, that makes sense as I emailed some info to some people, but have not maybe been too specific on here......

And that might, oh, just be on purpose.  I am a private person to the extreme and have used this blog to give out information publicly as I am able to process it myself.   I still don't like the term "breast cancer".  I don't like how it sometimes makes half the population in any given room in any given situation suddenly very uncomfortable (in case you didn't realize - males are 49% of the population as of this past month).  

To me it's cancer, and it needs to be treated or it kills you.  I love the guys that realize that and can talk about it in that manner.  It's hard the whole way around - for guys, for women, for kids, for me - and so doing a blog gives me the ability to give out the information I can deal with publicly and the rest is *private* for a while. 

It is also the best way for me to inform a lot of people at once - one of the toughest things to do when down and out sick is to be on the phone for long periods of time or send out 89 emails -- this is much tidier and easier on us.  So I'm sorry if sometimes it seems too impersonal - or sometimes seems too personal.  It is what it is that day, that hour that I write it. 

Back to the original point here in "Issue #2" -- I have been diagnosed with Triple Negative Breast Cancer.  It is beginning Stage 3 and lymph node in type and nature.  There are two lumps in a lymph node chain confirmed on ultrasound - one in my breast, one in my armpit - meaning it has spread.

There - big heavy sigh - I said it out loud because I still have not really accepted that label "cancer" yet.  I keep thinking the 'Cancer Drive' is for someone else.  I keep thinking that I'm sick, but the word "cancer" is not stuck on that sickness yet.   

Triple Negative means there is not any hormone involvement so you cannot use some of the drugs that work well with other breast cancers.  It is aggressive.  It responds well to chemo in the early treatment, but becomes resistant to chemo later on.  It is more likely to recur.

After I left our first day at James Cancer Center, finally receiving a definite diagnosis and a definite "stage", I woke up at 1am that night and realized that they had given me a diagnosis, a definitive treatment plan, and the next thing they should have said was "prognosis" and they never did that day.

And they still have not and I have not asked. 

Issue #3  I have talked about this a lot, but maybe not explained it well - I was accepted into a "Trial Phase One" study on a new chemo drug.  I wanted to jump into this study for all of the reasons listed above that you should greatly fear this cancer - the trial drug is supposed to help with the T cells - and heaven me help explain this because for once in my life I sat through a doctors appointment and cannot tell you 1/10th of what they said.

And I was even taking notes. 

But if the drug does what it is supposed to do, it somehow re-wires your T cells a little helping them overcome this type of cancer better and also helps with lowering your chance of recurrence.  Which is good, because any lowering is a lot better than the odds of it recurring.

I am "Trial #6" -- the 6th woman accepted into this study.  Phase One means they know that they have tested this on everything from animals to cells to cancers grown in petri dishes and know that it works there, but even though Phase One means there is a lot known in the laboratory, there is a lot that is unknown in regards to human response.  This particular study is to determine the "highest dose tolerable" - which after last week has taken on a whole new meaning inside my body - and I have come to believe those words were knitted together in the very pit of hell.

I am being given the normal chemo treatment for this type of cancer - which is weekly - because they want to hit it hard and hit it fast; and the experimental chemo drug is in addition to the "norm" - a tablet that I take 3 days each week.  

They start out with the highest dose on those drugs and "tweak" as they go along.  My body apparently found the highest dose tolerable of Carbo + Taxal + Ro two weeks ago and is still in recovery - my blood work tanked enough to make me lose another week of valuable treatment this past Wednesday. 

Issue #4 Treatment Plan -- As stated above the treatment plan is to do chemo weekly to knock down the aggressive cancer growth as fast and hard as they can.  In technical terms, I will have 6 cycles of chemo which include 3 weeks in each cycle.  So the total chemo treatment is shorter than some because of the study drug, making the total time 18 weeks.  Now that we have added two "missed" weeks into that number, I end up finishing chemo late May or beginning of June.

After the chemo treatments are done, I go in for surgery and my surgeon noted very importantly:  "it's an 8 week recovery".  At that time I scoffed a little, but after the last couple of weeks I have had, I'm not scoffing so much anymore...... I guess removing lymph glands along with everything else is a bit tricky and has some side effects for x number of people - and he wants to make sure as much as he can that I am one of the ones not developing lymphedema. 

At surgery, they do a thorough pathology on the lesions and surrounding tissue and if they do not find any cancer cells, I am almost done.  That happens 25% of the time with this cancer and subsequent surgery.  If they do find cancer cells, I go back into chemo for a while.  (Radiation is a follow up option sometimes, but in my case they would prefer chemo instead) 

Issue #??  (my brain is still in somewhat of "chaos-chemo-fog" so go easy on my counting here)  I am on a special diet that is called "low bacteria" or "low infection" diet.  It means I cannot eat anything fresh or from a bakery or from a deli - the idea is no "finger touches" - thus decreasing the chance of any germ giving challenge to my pathetic white blood cell counts.

So basically, if it is overly processed and overly indviualized packaged - it's ideal for me.  I have become especially fond of the individual apple sauce bowls - they are a life saver - I can pack them along to appointments and they are easy on the stomach.

I cannot be around germs since my neutrophils seem to like the diagnosis of being "neutropenic", my platelets also go down and up and the rest of the WBCs just seem to wave a white flag sometimes and declare they are not playing in this sandbox any longer.  So if someone has a temperature over 98.6, or a cold or a flu or anything that doesn't normally cause a lot of problems, it could put my neutrophils at the "surrender" table fast.  They just can't stand up to much now it appears.  

Sideways Info:  Several people have commented on my "port" situation - I don't have one yet - the reason mostly is that being in the study means I have to usually be IV cathed in two places - one arm to put the chemo in, and one arm to take the study blood draws out of.  They cannot use the same spot for both things,  so a port would not help that situation.  It's getting pretty slim pickings with the veins though, so I'm guessing I will be "ported" up soon.

Needle sticks don't bother me - at least not until the one last week - it burned.   Scott is even learning to sit through them - he's had enough of his own, but doesn't like to watch them done to me. 

I'm not sure if I have answered all of the questions yet.....

*****

And that was all "medical-techie-karen-talk".  Those are the facts as they have been presented to me.  My other side of my brain is not so concise and sterile.

My cousin sent me a card and in it she said she walked around the house for a week saying "no! no! no!"..... I kind of did the same - my brain just kept saying "I don't want this - I don't want this - I don't want this".

My obgyn told me the results of the "suspicious mammogram" and subsequent ultrasound on the phone the next day -- it was the Wednesday before Christmas -- and she just kind of blurted out "Karen, you have some icky looking cancer - I want you into a surgeon fast".  I knew it when I watched the ultrasound the day before, but I guess there is never a good way or a better "place" for someone to tell you such things.

The sonographer had found the second lump because I pointed it out in my armpit, and that's where the ultrasound stopped.  There could be more - could not be - but they do not do any further scans, instead blasting you with chemo to get any stray spots anywhere "under control".

I would rather kind of know.  But we are dealing with a lot of unknowns as of late, and you just have to put some trust in the people that see this every day.  (don't worry - I have checked on some sites and they do seem on target, smile)

Our whole world has kind of stopped.  I was surprised today that February is more than half over.  I'm glad Scott remembered to make the house payment - my internal clock says it is still January.   I am losing huge chunks of time to hospitals, doctors, chemo, chemo reactions, and recovery.  I go to bed after chemo on Wednesday and look at the clock next and it is 11am Monday morning.

It's foggy and chaotic.  And I could write a book on my downright hate and fear of high dose steroids now, but that is better left for another day.  My body does not like them.  When I called my symptoms in last Monday, I told the nurse that my internal organs told me I should not have any further steroid injections - and she glibly said "oh steroids - they make you hungry, fat and happy - what's not to love?"  That was her trained response, so I will not hunt her down and hurt her, but I am going on 10 days from my last injection and my body is still "puffy" and bloated from them somewhat.

******

At any rate, hopefully, this clears up any misconceptions or unclear messages from me.  And again, thank you all for praying.