All of you

This month has been awful yet wonderful.  I have received letters, candles, books galore and even lovely gifts that I don't deserve and a box of these beautiful chocolates from the Cavanaugh family that I don't even want to to touch because they are pieces of art.  I am so lucky and grateful in so many ways as the onslaught of chemo continues…

The best pieces of inspiration though have got to be your words.  Your love. Your light. You telling me I  can keep doing this, and as Charles says "A little bit of chocolate always helps."  We'll, yes it does sir!

As for cancer talk: The plan of attack now is to receive SGN-35 once a week pending my counts be well.  Plus Bendamustine on day 30 (end of the month).  There haven't been many reactions except for chemo fevers and major neuropathy (which we are all a bit nervous about -- losing feeling in my feet).  However, I'm trying to work my legs, and we're getting in home Physical Therapy starting next week.  Hopefully I will still have feeling in my legs by the time this is all over.  I guess it's the price you pay.

The good stuff:   My ESR, which has usually been indicative of my disease in the past reached an all time low of TWO this week.  This is brilliant and in many of our minds we're hoping it means the SGN-35, on a higher dose, is now working four years later.  I swear if it wasn't for my last charge nurse, Laura B -- I would've never allowed them to even infuse me with this drug.   But because of all of her notes from years ago, we all held our breath during this infusion, and she was right on the money, in so many ways.   I am so so grateful for women, nurses (Ellen, K, Em), PA's (Alex, Carrie).  The entire Six North floor and just all  of my medical staff in general.  I have resources that not many others have and on a good day, I'm able to see the light and have clarity in all of this.  I know how lucky I am…. how fortunate I am.  And I hope they all see that when I'm in the midst of hell.  

So we continue with SGN, ever week -- the last week of the month we add Bendamustine then I believe we will scan.  Transplant will most likely happen sooner than we all think (if I hit some form of remission), so if you do have pockets you want to open and not spend money on gifts which at this point we REALLY need the funds for Seattle.  Here is where you can go to donate: DONATE

Tomorrow I receive my infusion as it's been pushed back a day due to insurance.  I'll probably have chemo fevers and be out of it for the weekend, but one month of pure hell I think I can do with all of your support -- we've gotten this far in seven years haven't we? And it's mostly all of your doing.

Again, I can not thank you ENOUGH for all the goodies, letters, books, disctrations, love and light.  You make me move, you make me write, live, and breathe again when I can.  And I am so grateful for all of it.  

Love and light to all of you,

xoxox,

B. 

We did it.

We did it. Four days of inpatient, no big reactions this round the SGN+ Bendamustine actually worked.  We all held our breath, the entire nursing team, my oncology tream, my family.  But we did and it such a relief.   The one thing that has occurred though is I'm having a few fevers which I did have previouslsly when I received this treatment before, so right now I'm still in patient to make sure that everything is a-okay.  There's a part of of me that doesn't mind thought because this round of chemo went so smoothly, so smoothly in fact I slept right through it it.

I've been lucky too, my brother has come up to stay with me since Rich is still is still working full time and we're attempting to make sure I have a a caregiver with me at alll time,  as it it isn't easy being here trying to remember all of to he medications, getting food, and just having company…  I'm one very lucky girl..

Today we decide if they'll discharge me, as my next infusion will already be on Tuesday, so we'll see what the great O says.   I just wanted to thank all of of you for your love, light, and inspiration to continue one this path.   It isn't easy and it's so much more able and desirable when you have a  cheering section behind you.  So, I can't thank you all enough.  We will sees what the next week brings, but I will be sure to keep things update so people are aware of what is going on.    In addition people asking to visit; however, it the last thing I wasn't is get more sick so if you have even a a runny nose, its just not a a good idea for now.  

You can give a a call to me or Rich though and see if a a day is a a good day to visit as as I am open to seeing your beautiful faces.  

Alright, I believe all is all for now, will update soon.
Love you all,
xoxoxoxo
B.

Finally a bit of an an update.

It's been a a while, and I apologize just so much has gone on between different treatments -none have been working unfortunately, so the disease has continued to grow.  At this point between a thrush, an UTI, and in creased disease we've decided to admit me to the hospital and take care of everything.

At this point we are now attempting the Bendamustine +SGN35 Trial to attempt to get things under control.  The scary part about the SGN is that I was part of the phase ONE years ago, and had horrible, horrible reactions.  So we are preparing for the second portion of this trial, as an army.   O has done his research, from one of of my previous nurseses, care takers will be in place, and I'm finally on the north side of the floor for oncology medical (best nurses), opppososed to onc - surgery who hasn't seen these reactions.

We are truly hoping this trial will do the job, I'm no sure what else we have on the list have this one…. but it's leading up to the the allo-tranplant we are planning for.

So that is what we have for now.  I will write more again when I can,
Sending Love,
B.