So Far So Good

It is Friday morning after my 2nd round of Cocktail #2.  I am feeling a lot better than I would have at this same time with the first cocktail.  In fact, I was able to drag myself to the school to watch the I Love To Read Week parade, and several sweet little moments happened.  I had under-estimated the parking situation, so had to park far away and parallel.  I am not too shabby of a parallel parker, but under pressure with cars waiting, etc. I was thinking..."oh boy, here we go" but a dad had come forward and was directing the mom in front of me, then directed me and everyone behind me, stopped the other traffic trying to get through, etc. and just made it easy.  Then as I stepped out of the car, here comes an employee on a golf cart and offered me a ride up to the school.  I just thought....another little blessing, and that's what I told him on the drive.  He had no idea what my story was or how tired I was feeling, and he could have gone up to any of the other parents getting out, but that just worked out the way it was meant to, and I felt so happy to be there and reassured that all was ok.  The parade was so cute and the kids were just adorable all dressed up in outfits to go along with the books that their classes are reading.  And the best part.....walking up to the group and Jonathan seeing me and rushing over with a giant smile and a big hug.  Again...not really a big deal, but it was for this mom who feels like she has missed out on a lot of "moments" over the last few months.  So thankful that I didn't miss today.

My little Tom Sawyer!

3rd grade ready for the parade

Yesterday went better than last week.  This time my blood results before getting started were the lowest they have been.  I am not happy with this trend but I guess it is normal.  Without the Neulasta shot that I had been getting the day after the chemo, my white blood count took a really big hit.  And my red blood/hemoglobin numbers were down to their lowest point yet.  That really does help explain the fatigue.  The only other new thing I learned is that if my red blood numbers don't flatten out and/or begin to increase, and if I continue to have more fatigue, then we will have to look at a blood transfusion.  I didn't like the sound of that, but they seem to think it was no big deal.  Sounds like a big deal to me.  The PA said that some people with numbers as low as mine get them, but since I seem to be doing ok (and again, I have the luxury of resting a bunch throughout the day), then we will just wait and see.  

Otherwise, we talked about my big time congestion from last week (seemed to get better the last couple of days) with headache (like a sinus infection feel), little bit of neuropathy (coming and going), lots of fluid retention, new and different digestion issues, and my reaction to the Benadryl last time.  All of the first stuff was completely normal, and she gave me a little advice on things to change.  This time they gave me Ativan (relaxer) first, then slowed down the Benadryl drip and I was fine.  Thank goodness.  Also, they gave me the steroids again, and maybe I just missed it last week, but I wasn't expecting that.  Still, I am done with the oral steroids.  

My friend Karina and I passed the time catching up and just dealing with the different things going on there.  Chris often asks me what we talked about and I guess maybe I am more drugged than I realize, but I usually have a very hard time recalling much specific.  Most days I have many moments of frustration, embarrassment, fear or humor (depending on my mood) when I simply cannot recall the names of objects, a specific memory, a person's name, etc.  Again, I think this is normal but I really, really don't like it.  I hope and pray all of the cognitive ability I might have ever had comes back!!!

The only other related item is about a remote possibility of adding a new med to my cocktail.  The short version is basically:  Back when we consulted with Emory, a new medicine, Perjeta, was brought to our attention.  One trial had been released that did not completely match my current situation but it was close enough that the Emory doc said she would probably give it a try, but that insurance would probably present a problem.  Perjeta attacks the Her2 protein that feeds my particular kind of cancer (I believe I am saying this right).  That is the same thing that Herceptin is doing right now, but Perjeta attacks in a different way (so in my non-medical opinion it is another weapon to throw at the cancer).  Of course there are risks associated with the Perjeta, just like the Herceptin (heart failure/weakness...not to be taken too lightly).  Anyway, back when we returned from Yellowstone and the clock was ticking so quickly, we talked with our Piedmont doc about the new drug, but he wasn't willing to "go there" with the new drug since it was not approved for my situation specifically and because of the risks associated with it and the unknown factor given my situation.  We went with that.  Last week or the week before a new trial involving Perjeta was released and it is back in the news and we are second guessing the decision.  If we were going to take this drug it would need to be starting now or really, really soon in order to get in 8 weeks of doses before my chemo regimen ends.  The new trial still does not match my situation perfectly, and the closest speaks to the pre-op setting.  We are frustrated that we could have been given the Perjeta IF they had realized I was lymph node positive before my surgery.  But we have to deal in reality and trust that no one expected me to be lymph node positive based on valid tests and that for whatever reason things have happened the way they have.  

Chris went back to my Piedmont doctor last week and revisited the Perjeta issue.  Doc still says no based on the trials not fitting my exact circumstance, wanting to go with accepted and tested protocol and given the risks to me.  Chris asked him to please consult with MD Anderson about me (where my doc used to practice), and my doc agreed.  He just came back to us and said MD Anderson agrees with his decision.  This all sounds right I think, but Chris especially is struggling with accepting the idea of a new drug being out there that I cannot have.  He has asked for a new consultation with Emory, and as much as I dislike the idea of changing doctors and hospitals, we would do it if the Emory doc says yes.  We are just knocking at this door one more time, and we will trust and accept the final answer that comes....hopefully today.  We are trying to leave no stone unturned and to be our own best advocate.  I will admit that I personally have not been too stressed about this new "bump" or question.  But my dear husband has lost a lot of sleep over it, and I can see the look in his eyes and the stress on his face.  He is really focused on the long term and the life that we want to have together in old age, and I love him for that.  It is not easy to watch him try to mask relaxation, mainly because he is such a bad actor.  :)  I can see right through him.  Luckily, the kids can't, so that is good.  If you feel moved, please pray that the doctors take the time to think through this decision specific to me and what is in my best interest, and that we are doing the right thing, and for us to trust and accept the answers when they come.  Chris went over my "stats" as a refresher with my current doc, and that is always a sobering reminder of why we are going through all of this.  I tend to block these things, but the numbers discussed with my current plan are that I have a projected 85% survival rate at the 5 year mark.  The Perjeta would increase that to 87% or 88% I think.  I believe I also remember the idea of that statistic including EVERYONE, all ages, etc.  IF that is true then I'd like to believe that I am on the high side of those numbers, maybe higher??

So there is the update.  I am pooped and planning to stretch out and maybe try to read a book.  All of the fluid retention is bothering my vision, though, so maybe I'll just watch another episode of NCIS on my DVR.  I am glad to have discovered this show at the beginning of this cancer chapter.  There were so few programs that we regularly watch, and I tend to fixate on one show and watch all episodes, then find another show, etc.  And I really don't like most sit coms, anything gory or too scary or most reality TV, but I like a little tame drama.  Yes, you are probably thinking it so I'll go ahead and say it....I am sure my TV thinks I am 70 years old based on my viewing habits.  Soooo, it has been kind of perfect that I discovered a show that has been in production for a decade.  My DVR always has about 20 episodes waiting, making me a relatively happy camper.  From the girl who never turned on her TV in the middle of the day and might have been known to scoff at those who do, I have come a long way, mostly guilt free.  :)  Have a great weekend!

Schedule your screening tests friends!!  Do those self exams!  Don't procrastinate!