Day +70 Part 2

I had a clinic vist on Wednesday (Day +70) and managed to put on weight for the first time in quite a while. A massive 1.1lbs! My Blood pressure seems to be doing great at 107/74. All my counts were fine, Hgb 10.4, Platelets 107, my Wbc was a little low at 2.4. So next week they will check it and if it's below 1.9 they will give me a Neupogen shot to bump it up.
Generally I feel I have more energy, the trick is not to do too much and get worn out. Pauline and I try to walk for over an hour every day and I'm starting to do some weight bearing exercises.
All going well I have only 3 visits left to the clinic, Pauline has been here over a month and my friend Bernie will arrive on Thanksgiving and will be my last carer! After that I'll stay for a little while on my own at HL and I have already contacted a couple of 'Angel Network' organizations to help me get back home early in December. I have been in NYC almost 3 months and would like to think this stage of my treatment is drawing to a close and I'll be home soon and be well enough to enjoy and great Christmas!

Day +70

Well my apologies for not posting for a while. We had Kristy, Mary Lynn and the kids visit last weekend which was fantastic! It had been 11 and a half weeks since I'd been with them and so it was about time. My favourite times from the weekend were laying on the ground building Legos or laying in bed just chatting to Sophie. We did lots and I think they liked NYC, but like me were/will be glad to get home. Here is a taste of what we did..

Exploring Central Park!

Feeding the horses by the hotel.

Enjoying the playground.

NYC!

Snack in Central Park.

Nov 2nd Day +58

Well here we are...still here. Last Wednesday was clinic day and I saw Dr Koehne. He had managed to drive into Manhattan. Some of the staff I met are staying at the hospital as they have no way of traveling to and from. Others who live on Manhattan described their appartment as a 'dorm'!

So my vitals are still fine which is great, I am loosing a bit of weight 1.5lbs this week and a total of  about 6.5lbs since leaving hospital. I have no real appitite which doesn't help.
Blood work is fine Hgb 11, Plt 133, Wbc 4.something.

I was supposed to get treatment but it had been canceled and only emergency treatments were being provided. Which puts things back a little, I get the delayed IVIG next Tuesday, then the final IVIG 4 weeks from then. My very last scheduled proceedure/treatment is a bone marrow biopsy on December 5th and then (all going well) I can go home! I can't wait! But I guess I will...wait.

We have been very lucky here at the Hope Lodge, we never lost power through the hurricane. We are pretty much on the dividing line, streets around us and south have been without power for 5 days. 34th Street and above, in the main, did not loose power...so like I say we were lucky.

I went for a walk over to the where I normally pickup the 'High Line' at about 30th and 12th Ave. It was closed so I went south into Chelsea to where the galleries are. At about 26th Street I walked west towards the Hudson river, walking along I was passing people sitting outside dark galleries surrounded by paintings trying to dry them. It was a little surreal. As I passed another I saw a man bringing out an A1 portfolio case. He opened it to find everything inside soaking wet, as I passed he just stared at the contents unaware of me. My heart dropped for him, it is so sad. This is such a small moment which is multiplied millions of times, with people loosing so much.

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!