Quick update

I wanted to post a very quick update (I'll update more later) that Brian developed a fever last night and had to have blood cultures, a urine culture, and a chest x-ray done.  He still has a slight fever this morning, so he's on 2 IV antibiotics (Vancomycin and Zosyn) along with his antiviral and antifungal medications.  Pretty soon he's going to be bionic!  He's still very tired but seems to feel a little bit better than he did yesterday.  The doctor came in and said that the chemo he's on right now (Fludarabine) is very well tolerated and so he might even regain his appetite for a few days before everything starts to hit rock bottom...we'll see.  Last night was a very rough night, they were either in here checking his temp and other vitals or his IV pump kept beeping all night.  I don't think either of us got more than 1-2 solid hours of sleep.  Brian's sleeping again right now and I'm going to try to go back to sleep, so if you try to call us and we don't answer, that's why.  Brian is really not up for phone calls these days, so if you send him messages via email I can read them to him.  Thanks to everyone for all of your support!

Halfway point...of chemo!

We're halfway done with chemo!! Today he got his 2nd, and last, dose of Melphalan and he also got his first of five doses (one per day) of Fludarabine...so 2 down, 2 to go. Counts are still fine, actually went up today which is kind of weird, but we'll take it. And creatinine is stable at 1.6 for now.

Today started off rough - the first thing he did when he woke up was vomit...no fun. But after that they've been pretty aggressively managing his nausea, so he's actually been sleeping most of the day. I'm confident that he will NOT remember these next few days due to the antinausea medication (Ativan) causing him to sleep and also having that lovely amnesic affect. I, on the other hand, will remember it all. I've often said that they should also seriously consider medicating the caregivers:)

What's missing from this picture?  His IV pole!!  He was free
and then tuckered out after his shower.

Not much really happened today.  The most exciting thing was that they changed all of his IV tubings, so he got to shower without the IV pole. This only happens every 4 days, so he took a nice, long shower and enjoyed it.  Also, we ordered some photos to hang up on his walls and they arrived today, so I got to decorate:)  Tonight my brother, Zach, is coming into town and we're going to have dinner together to celebrate my birthday (which is tomorrow). I'm really excited to see him and to have a little fresh air along with a nice glass of wine!

And a decorated cabinet, too.

Our decorated bulletin board

 

1 down, 3 to go

Eating ice chips!

It's Kristy writing tonight - Brian is fast asleep in bed...that means you'll get a lot more detail from me:)  Today had some ups and downs, and is definitely the start of the downhill spiral towards not feeling good.  He woke up this morning feeling nauseated and even requested a dose of Ativan for nausea.  After that kind of "kicked in" he went for a walk around the unit and had a good afternoon.  He just needed to get over the morning hump and then he was fine.  He got his last dose of Busulfan at about 12 noon (yay!) and then started his second chemo, Melphalan, at 3:15.  He had to chew on ice chips for about 1.5 hours before, during, and after the infusion in order to decrease bloodflow to his oral mucosa and therefore reduce the likelihood of getting mouth sores.  This is the one that caused him to nearly need dialysis after his last transplant, so we're hoping and praying that doesn't happen this time.  There are 3 big differences this time that are in his favor: 1. He is getting a slightly lower dose this time since he is receiving it with 3 other chemo drugs, 2. His baseline creatinine is much lower than it was last time, and most importantly 3. His disease is under much better control going into this transplant than the last.  So we're keeping our fingers crossed that his kidneys cooperate with us this time and don't make things too exciting any time soon.  All of his counts are still fine, so no transfusions needed yet.  Today is the first day he hasn't really eaten much...things are starting to taste funny and food just doesn't sound good to him.  But he's still drinking a lot, which is more important.

 

I look scary and alien-like while alseep!

Many of you have asked how I am doing, sleeping, getting on, etc.  First of all, thank you for all of your thoughts, texts, emails - they really brighten up my day!  I am actually doing ok.  I am sleeping much better than I expected to sleep on a recliner, which is a huge bonus.  The recliner folds out completely flat and I brought ear plugs and an eye mask (and sleeping pills) to help me along, so I'm actually doing great.  The hardest part is learning how to sleep with the mask and gloves on...but slowly I'm getting used to it and sometimes I don't even notice the mask anymore (except behind my ears where the elastic bands rubs).  I'm getting out every day and going for either a walk or a run - this helps my sanity tremendously, plus it's keeping me healthy.  Today I went for a 3 mile run along the river and it was absolutely gorgeous.  It was perfect - 80 degrees and sunny, and I had a lovely breeze off the water keeping me cool.  If I could replicate that every day I would, it really was wonderful.

View on my run along the East River

Once more into the breach dear friends....

Well today was fine, lots of walking the halls as I'm guessing by tomorrow my ANC will be under 1.0 and I will be confined to my room. I have noticed this evening the chemo is starting to show, I ordered dinner but have no interest in eating and fatigue has also begun. I took a nap this afternoon and didn't wake when Kristy came in. Tomorrow is more Bulsulfan and the start of 2 days of Malphalan so I expect it to get much harder pretty quickly.
Matt came by today it was nice to see him, he brought speakers, so I now have music!
Not looking forward to the next week or two, but I guess I need to go through them to get back to my kids, hopefully for a long long time.

MSKCC my home for the next 4 weeks or so..

Got here about Midday having spent the morning walking the High Line (highline.org) down to the West Village and back through the streets, all told about 5 miles.
Here is my room..

It is pretty nice plus the chair I'm sitting in folds flat and will be Kristy's bed...we'll see how comfy it is tonight. I start one medication tonight and chemo at 6am tomorrow. They check vitals every 4 hours so 2am will be a blur I'm hoping! The unit has 25 rooms and I've seen a lot of bald people...so I guess the chemo works. My doctor on the unit is Dr Sauter - seems like a nice chap. Dr Koehne will be by tomorrow for a 'social visit'.
This is how Kristy looks for the next while..

Whenever anyone is in my room they where gloves and mask. So I have no idea what anyone looks like! The 'bike' they promised me is a bit of a let down, however sitting in a recliner while cycling will be about as good as I can manage I'm told...

Not quite a Madone..

So we've made the most of our time in the city while I've been well, now it's time to get down to the business at hand.
Thank you for all the well wishes and cards, Kristy is letting me open one per day.
Oh my my nurse just brought in my IV pole, it's got a lot of 'stuff' on it..and it's all for me!

Special delivery for Brian!

Well we're here...

Well we’re here!

We are staying at the Hope Lodge on 32^nd St while I have some tests done and will be admitted on Sunday.

So far so good, however because of all the insurance appeals etc. took so long I had to repeat some of the tests for my work up. The most annoying/painful was another bone marrow biopsy. This time he had to try a couple of spots as my bone was too hard for him to get through initially…and I believe I get another one 30 days post transplant!

Hope Lodge is great – the people and the place are lovely and to think it is free through donations is absolutely amazing!

Tonight Kristy and I are going out to celebrate her birthday early. One of the stops on this evening schedule will be the Campbell Apartment at Grand Central Station.

This will be my street for a while once they let me out of MSK

Bright and early tomorrow morning I have my line placed as long as ‘placed’ involves some sharp cutting instrument…I remember last time I was a little too chatty for the doctor doing the procedure, I think I may have got extra drugs to keep me quiet!

See you soon!

So we are nearly off to New York, everything is in place, now all we have to do is get through the good byes! I did have a little blip in so far as I had a KLC (kappa light chain) blood test a couple of weeks ago that showed I was coming out of remission, the kappa light chains went from 1.38 to 1.98 in a week. However, a test last Wednesday (results today) showed it is back down to 1.89 - so no problem.
Some people have asked if we have an address while we're in NY. We thought it best not to test the hospital postal system, so the address below is our cousin's address that we'll be using until we get an address at the Hope Lodge:

Jennifer Hutz
c/o Brian Delaney
68 Conselyea
Brooklyn, NY 11211

I'm sure I'll say it again but - thank you to all who have said or sent words, prayers or good vibes to me and my family. I truly have been blown away by all the help and encouragement we have been given.

I wanted to mention the two donation links on the blog, I really don't like asking for help - especially for money. It is there because people asked for ways they could send us money. I want people looking at this blog to do it to see how we're doing and to keep us in your thoughts. When I'm looking at other blogs I always feel a little guilty when people have a 'link', and I want to say now please don't feel that way. We have been amazingly lucky to have great insurance and MSK (Memorial Sloan Kettering) have also helped us bridge the financial gap when insurance refused to pay for the transplant (with financial aid). I (and a carer) will be staying in the Hope Lodge in NYC for up to 5 months, and that is provided free of charge. We still have expenses for sure, as Kristy is off work unpaid right now and then will have to go part-time when she comes back. Friends and family have been incredibly helpful...so just to say, the 'link' is there for people who want to help in that way, but just by checking my blog and sending words of encouragement, you are helping.

People have asked how I feel about the transplant - well, to tell you the truth...We've done our research and we know this is the best chance for me. I am not dwelling very much on what is to come as to do so is pretty debilitating. Leaving the kids - I just can't think about, we have prepared them and us as much as possible and why start the pain and tears early! The transplant is what it is...no fun and all we do is get through it as quickly, intelligently and carefully as possible. Having said that I am really interested in the process and the technical details of what happens to me. However not feeling great makes it a little bit difficult to track with everything. I'm bringing my camera so I will hopefully document some of what happens but through experience I know it is difficult to do that when you're not feeling great

I'll take a pic of my room when I get there!
Brian.

You are not going to believe this but...

It is on again...NY, the transplant. At the 11th hour a lady from MSK (Memorial Sloan Kettering) managed to change someones mind or twist an arm or something. I have spoken to her a few times as has Kristy and she has been the only person who seemed passionate about finding a way to get me the transplant - and she did it!  I will meet her before I get transplanted to say thank you and maybe then I'll get the details of just how she managed when no one else could. But as of now the financial/insurance barriers are gone and I will be admitted August 26th and the next phase of my treatment begins!
The last few weeks have been quite the rollercoaster and I kind of had my mind set on staying in KC with my family - the idea of being in NY for the next 4-6 months is not a fun one. However speaking to my doctor here and in NY this is by far the best option to stay alive long term - so there really isn't a discussion as to will I or won't I. It is a great opportunity. The risks are not too bad, when I spoke to Dr Koehne (pronounced Kona) He was able to tell me:
Over the past 4 years 40 people with MM have had t-cell depleted transplants, of those 70% are still alive.
In the first 100 days post transplant the risk of death is very low, near zero he said if he had to give a percentage it would be about 2.25%.
Infections are not uncommon, in the first 100 days they are both bacterial and viral but rarely are they bad enough to land you in ICU, they are routinely treated with antibiotics.
3 months to one year post transplant the biggest danger is viral infections such as CMV and EBV and of course myeloma coming back.
Over the first year risk of death is between 10-15%.
Of the 3 people he transplanted 4 years ago, 2 are still in complete remission and the other has relapsed.
So not bad all in all.
So we will get ready again, this time with no delays hopefully!

Making Plans

So the 2 'last ditch' attempts at getting the T-cell depleted have not worked...but another possibility has come up...nothing more on that right now - we'll just see what happens. It is another long shot - and I promise - it is the last this time.
So yesterday I went into clinic to start plan B, a plan for the future. We are going to see if Insurance will allow me to try to collect more cells (collection maybe a problem since chemo makes the process more difficult) as I'm in a 'stringent full remission' at the moment. Kappa light chain number is 1.38 at the moment. We will check on the plasma number but all being well, it is a good time to collect cells with a view to using them for an autologus transplant in the future sometime if need be. Other than that I'll be back on various chemo drugs after collection of cells, first as a consolidation therapy and then maintenance using some of the drugs I've used in the past and maybe a couple that our good friends at the FDA have/will approve in the near future.
So in short, we nearly have a plan, and I'm nearly sure it will be carried out in KC.
Having been off chemo for a while means I'm back to my old self-ish. I feel pretty good and even went for a run this morning. Well a run-walk-run-walk kind of thing which felt great - I'm sure I'll be sore tomorrow as it has been a while since I ran - but it'll be worth it.