All fine at Hope Lodge

Hello from dry, electrified Hope Lodge. I know from the news I have been watching that lower Manhattan and surrounding areas have been hit pretty badly by Sandy, however Hope Lodge in Midtown is fine. As Kristy said we took some precautions just in case, but we never lost power. During the evening and night the building swayed (it's about 50 stories) and on the 12th floor where I am the whole room creaked disconcertingly, we were told this was normal so were not too freaked out (just a little..). Today we are going for a walk as the wind has died down and I will hear later if they will cancel tomorrow mornings outpatient clinic visit. Today understandably all appointments were cancelled.

Hurricane update

Hi, it's Kristy writing this blog post.  Brian is unable to get to the main computer room at the Hope Lodge, which is the only place he can write the blog (it's blocked from the wifi there for some reason), so I thought I should write a quick update.  I've gotten lots of calls and texts today to ask how Brian is doing despite Hurricane Sandy - I'm happy to report that so far he's doing just fine.  They're taking lots of precautions in NYC, so pretty much all of the public transportation has been shut down, several appointments have been cancelled, etc.  The Hope Lodge handed out flashlights to everyone and they shut down the elevator in case of power failure (I'm assuming they'll turn it back on tomorrow).  Pauline (Brian's sister) went out a day or two ago and stocked up on some essentials (food & water), so they should be fine for a little while.  I'll try to put up another post tomorrow, but if I get side tracked please assume that no news is good news. :)

Day +49 Clinic visit

Well Pauline and I were up early this morning to jump on the 7.30 shuttle. I've had my vitals done and blood drawn, just waiting now for my NP visit.
BP 115/74, HR90, temp fine and weight 164lbs which I can't believe. I lost half a pound when I thought I would have put weight on. I guess I need more bacon..
Everything is good, Creatinine 1.8, Hgb 10.7, wbc 3.0 and plt 133. So back in a week.

Day + 44 (I think)
I went in for my weekly check up on Wednesday. All my numbers were pretty good. Since my transplant my BP seems to be very different for some reason. Before I was taking BP medication and was normally about 130/80 but now without any medication I'm 100/70! quite a difference I would say, in a good way I think. We'll see if it changes further. I did loose 3lbs this week which was a surprise as I had been eating fine, maybe the daily walks with Kevin used up more carories than I thought!
Platelets 141, Hgb 10.8 and wbc 4.0, so all good. Last weeks bone marrow biopsy results are coming in bit by bit. So far they said there is no sign of Myeloma which is great. The next piece of information will be the percentage of marrow which is donor and which is me. Dr Koehne is expecting for 95%+ donor...so that is what I'd like too.
BK virus test came back positive and the week of antibiotics is really helping. My symptoms are down to 30% of what they were, so that is good.
So Kevin spent a week with me, it was great to catch up and get out on some short walks. I think he really liked NYC and plans to come back with his family some time. Pauline my sister arrived on Wednesday and will be here for a little over a month. It has been great catching up, sadly she is still stuck on Irish time and gets up at 4am poor thing.
I will attach a couple of pics one of Kevin and I in the 12th floor kitchen and the other one I found that Kristy took before she left...when I still had hair, I wonder what color it will come back?

UPDATE: Just found out that the bone marrow showed ALL donor cells, which is good news...I am no longer me, marrow-wise.

The 'hub' of the 12th floor, Kevin and I in the Kitchen.

Me during chemo before 'it' all fell out!

Day +36

Yesterday was a busy clinic day. Zach, Kristy's brother, came down from Philly and spent most of the day with me so Helen could do some gallery viewing before going home today. I had lots of questions for Dr Koehne at 11am, starting with what was the result of the BK virus test which was done 10-11 days before. After much checking it was determined that it never got to the lab...so no results, instead I had to repeat the test...not too happy about that. After explaining that my symptoms were a little worse he agreed to start me on Cipro (an antibiotic) which maybe should have happened a week ago.

I asked Koehne about when I could leave. Part of the protocol for this transplant is to have 3 IVIG infusions, basically they help my non-existent immune system get artificially enhanced. I get one per month for 3 months and got the first one on Oct 3rd. So by about December 3rd I should be done and barring any other problems (knock on wood) he said I could leave after that (as long as I come back for check ups and Leukocyte infusions). This is fantastic news so I'm going to do all I can to stay infection free and fit as a fiddle with hopes that I can return to KC very early in December. I of course will still have very little immune system and will need to take all the precautions - but I will be at home! So that is the aim, we'll see how it plays out...

At 1pm I had a bone marrow biopsy which went pretty well, though today it is pretty sore. All my blood work looked good so all in all it was a good day at clinic! When I asked Dr Koehne today about going home he kind of laughed, he said in the past statistics for people with Myeloma at 100 days post allo transplant were that 60% were dead, now 0% in his program were dead. Now his problem is that people are feeling so well they want to leave and go home! That is a great 'problem' for a doctor to have!

Friday Day+(wow I've been away from home too long)

Went to the clinic today for labs and IV fluid. Wasn't very impressed with the first 2 attempts to get an IV in but we got there in the end. I've got some saline in my muscle tissue which doesn't seem to be too happy this evening...
Anyway enough of that, my Labs were fine and I got back the Kappa LC numbers from my blood work on the 3rd and the KLC number is <0.04 which is undetectable - which is good news, lets hope it stays there!! Normal range is 0.03 to 1.9.
I have symptoms which led them to test for BK virus (look it up if you want the gory details), test is still pending and when it does come back they will do nothing anyway, as a virus it will just need to run its own course.
Nothing else to report, other than it was 81f here today!
Also, thank to Julie and everyone else helping with the garage sale tomorrow in Kansas City, wrap up warm I hear it will be a chilly start to the day!

Day +27

Well, Helen and I have been catching up which has been great. We went for a walk on Sunday on the High Line, I surprised myself by walking all the way home from 12th St and 9th Ave or where ever the southern most tip is. We got a cab down there to maximize the pleasent walk back. However it was a nice day and we weren't the only ones with the great idea. It was so busy I couldn't take my mask off at all, but it was great to get out.

I got to see/experience some moments of Sophie's Birthday via the wonders of Skype. I was sorry to miss it but don't think I would have had the energy needed to keep up!

I spoke to James on his way to school today and he informed me he saw a racoon! He and I were very excited, Kristy told me later that he saw another one as they dropped Soph off at school..So unless racoons are becoming a lot less afraid of people the first spotting has been called into question. It was a great conversation though!

Today we'll pop out for a short walk but it's forcast rain so we won't be going far. Tomorrow I am scheduled for a clinic visit and IVIG which is a 4hr infusion so we will be there for a while...

For people who have asked, these are my addresses at Hope Lodge, I say addresses because UPS/FedEx go to a different one than normal post.
normal post:

Brian Delaney Rm 1201
c/o American Cancer Society Hope Lodge
PO Box 2284
NY, NY 10116

UPS/ Fed Ex etc.
Brian Delaney
American Cancer Society Hope Lodge
132 W 32nd St
NY, NY 10001