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

Lab Visit Wednesday.

Hello, just to say my lab visit yesterday was pretty uneventful. There were a few things that could have gone better but it is just their administration that need to be a bit sharper...
Anyway counts were good Hgb 9.5, Platelets 128, Wbc 4.2. Creatinine was 1.8 and that was only because they left me on potassium supplements a little long plus a little dehydration - all sorted now.

I notice I'm getting stronger every few days which is great, I go in tomorrow for blood work just to check everything is normal again regarding the potassium. On Wedesday I also had my central line taken out so that will make showering easier!

Kristy leaves on Saturday and my sister Helen arrives as my next 'carer' tomorrow which will be fun. I'll of course miss Kristy she has been great (even in the face of a demanding husband), but I'm glad and envious she gets to cuddle the kids on Saturday!

I hope all is well with everyone! Thank you again for your support.

Sept. 24 Day +19

We are playing catch up a little bit today...the wifi connection at the Hope Lodge does not allow us onto the blog website, so we can only write updates from the public computers downstairs.  Needless to say, it takes more organization and therefore we haven't been as faithful at writing daily updates - sorry!

Here are some photos from our first outing after being discharged from the hospital - picnic in Central Park! Our friend, Alysa, came to NYC to visit for the weekend, so she's in a couple of them.

Eating lunch on a bench with Alysa

In the Great Lawn of the park, Smurf's castle behind us!

 

The next doctor's appt is on Wed and we're hoping that Brian's line is pulled that afternoon, but it will be dependent upon his labs (which they expect to be ok).  He continues to gain a little bit of strength each day and today his nausea seemed to be better.  One thing that Brian has commented on is that he can really tell a difference every few days in his energy level and strength - when he had his autologous transplant 2 years ago it seemed like progress took much longer (or so he feels), so this is very encouraging to him!  As we prepared for this transplant we just expected the absolute worst...everyone said how much more difficult an allo is vs. an auto...he is happy to report that this has not been the case thus far for him (knock on wood)!

This week seems to be getting busy, as I'm preparing to leave on Sat. morning, so I'm trying to get things in as much order as I can before leaving (which of course includes a little bit of shopping!).  We're both kind of nervous about it, but we know he'll be in good hands:)  It's a bittersweet thing...Brian will miss me and of course I'll miss him, but it will be great for me to be back with the kids at our house... and unfortunately I have that thing called work to get back to.

We now have a mailbox here but of course we left the address upstairs in our room...we'll include it on the next blog entry!

Day +16 spent in Central Park (well some of it).

I am really tired generally and I had my first visit to outpatient clinic post transplant. I would have bet my hemoglobin was low and I might even need a transfusion but it had gone from 7.7 to 8.8 and platelets had gone from 32 to 53! So no blood products needed...I'm just tired! And I guess 16 days post transplant, thats okay. After lab we went to Central Park found a tree with shade and sat and ate and chatted. Alysa a friend from KC is here for the weekend so all 3 of us got to spend over and hour sitting and enjoying the park!
This evening Kristy and Alysa are going to see a show which should be fun. I have planned a very quiet evening, today was great but I am bushed! I haven't any photos with me right now but we have some nice ones and will post them soon.
Thanks as always for the notes of encouragement.

Day +14 and I'm leaving for Hope Lodge

Hope Lodge found a room for me so I leave today! This is about a week earlier than planned so I am pretty happy. I still feel tired but that is just a combination of drugs, low hemoglobin, a hospital bed and getting up at 5.30 - if only I could jump on a bike at that time I'd be a very happy boy.
MSKCC has been great, the nurses day and night are really great and everyone else have also been great. Having said that I hope I never stay here again!
The outpatient lab will be a twice a-week trip from now, but that is fine. Staying outpatient is my plan. Today I finished opening the cards Kristy secretly organized for me. Thank you for the words or encouragement it was a fun thing to do every day.
So now the next phase begins, Hope Lodge will be my home for the next while and hopefully I get stronger and stronger there. Staying infection free is the plan and letting my body heal.