Sunday, April 24, 2016

Ring, Ring!

Or whatever that bubbly sound is when a Skype call comes in.

We heard back from Italy and the Dr. wanted to schedule a Skype call with me. I forwarded the message on to Shane. Shane wrote back to me and said it was all taken care of. At 9:00 on Thursday morning we could expect  a call! I asked him if it would be weird to have him on the call as well. He asked if I'd read his reply to the doctor. So I went back to his email to the hospital team (from me, like I said, he's also making me look good on paper) and re-read it. There it was. He gave them my husband's (that would be Shane's) Skype name and mentioned he(Shane again) would be joining us on the call. (Cute and smart!)

Shane  told me it would be a video chat. So I immediately hung up the phone and called the salon. Usually I wait until my neighbor points out 'Wow! You've really got a lot of gray!' to get my hair done. But this time I decided to beat her to it. I thought just in case they thought I was too old and might not be able to handle the procedure, I would nip that possibility at the root. I ended up having to take an early morning appointment on the week-end, which I regretted for about 5 min when I woke up Saturday morning. I figured I'd get a hair cut too. I pondered trying something different/shorter/crazy as I might not have to keep it for too  long if I didn't like it. Shane thought maybe I should enjoy it long for as long as possible. Which I did. And I'm glad.

All week we were working on our list of questions to ask. By which I mean the night before, we sat at the computer together and watched a movie. Then we jotted down the questions we wanted answers to. We had looked over the rough treatment plan and discovered a four-week gap between hospital stays. 2 weeks in. 4 weeks out. 4-6 weeks in again.

I was really excited about the prospect of maybe being able to come home for the four weeks, in the event we do not take all the kids. The four weeks is before your/my immune system is destroyed so it seems like it could work. Other patients talked about travelling at that time and it felt like it would help break up the hardness of not being able to see the kids for 2-3 months at all. Honestly, I'm not worried about all the other aspects of the procedure.

Nausea? I had the worst morning sickness with Malachi. Most days I was  bedridden and threw up every day for 3 months straight. No matter what I did or ate, every evening without fail I had to take a call from Ralf. So awful.

Losing hair? Big deal. After all the post-partum hair-loss I've really only got about three left anyway.

Headaches? Those were the worst with Cyril and kept me from doing just about anything. I do feel like I 've had some good training and can't wait to put it all to good use again.

But now I'm not pregnant. I won't be taking care of a 2 year old as well feeling crummy. I won't be nursing Fiona, so I can take big pain killers when I need them. I can lie in the bed. Read a book. Watch a movie. Someone else will bring me food. I know I'll eat my words when it comes to it, but for now, it all sounds kind of dreamy. Plus, like everyone who's gone before me, the knowledge that this is changing my future for the better will carry me through.

Shane asked if I thought I'd feel differently about the future and planning things afterward. I had to think about it. I don't know what it is like to plan without the thoughts of 'I hope I can do this/walk/have the energy/drive/eat real food' like I'd like to be able to in order to  participate in whatever the future plan might be. Having a  host of not-fun surprises that descend on you at whim does make for iffy planning. It feels a bit like living under a Damoclean sword. I don't remember when it wasn't there.  Or what I was like then. (Except I could wear high heels. Silly thing. I don't miss those at all.)

I'm not really sure how to think about it all. I know, in any situation, we always have a choice in our response. Even very difficult situations, which mine really isn't. Inconveniencing, yes. Limiting, I might let it be more so than it is.  But not unbearable. I would like to be able to say 'Yes. This is so. But I choose to respond like this.' And not let it influence my choices. I'd like to be the kind of person who finds the bright spot in every situation. Who greets adversity with excitement for a new challenge. Who embraces the unknowns with the enthusiasm of a kid opening a Christmas present. Who sails into uncharted territory with the energy of  a sailor looking for lost treasure in a new land. Who delves into the earth like.... Ok I'll stop. Its getting silly.

But when your Christmas present is 'oh look! Concrete boots! You shouldn't have.'
And you open the treasure chest and find a 'feels like you are riding  a merry-go-round for life card.' And you can't quite keep up with the what feels like 50,000 steps, but its only like 3, or 7. No, Blue! And  you are not allowed to write anything down,  but you need to do them all, in order, to get to the end of the race and get your prize. And even if you do give up you can't remember the way back or which gift goes in which box.  Well. One gets really tired of surprises. And is tempted to stop opening boxes.

Thankfully, Shane is the adventurous sort. He loves opening boxes. And he has the energy to pull me along as well.  He was listing out all the options for potential HSCT facilities and dates, trying to get me to focus on what was most important in my choice of location, procedure, and timing. Would I wait X amount of time to get treatment A? or B? Would I take the sooner date or hold out for the preferred location? If AX is to CX  as BX is to RQ, then WTF is P? Then my head exploded. So I made a latte and sat down. I know he is only trying to help me clarify things in my mind. But it still hurts. It helped. Florence is still my preferred place and treatment regimen. After the Hutch. Shane has to keep reminding me that ship has sunk. Not that I don't know that, I just keep thinking how much easier it would be for everyone. And now my dream boat, after Shane, is to go to Italy. And they were about to call us!

We got the kids up early, you know, like 8:45, so breakfasts would be over before we got the call. We sat down with pen and paper (Shane was going to be note taker)  and our list of questions. Then I had to pee. So I quickly ran to the bathroom and was relieved, ha ha, to find they had not called while I was gone.

9:00 came. 9:05.  9:10. I peed again. We checked the time. CET to PST. Yes, we had it right. Maybe its like the waiting room. It will take another 15 min to see the doctor. 9:20. Maybe there was an emergency and they are saving someone's life. That would totally take precedence over the Skype call. 9:30. Maybe they are on Island time. Could happen any time in the next 2 hours. Finally, at 10:10 Shane sent a message to the doctor saying we were still waiting, maybe something went wrong. Then he looked at the account and realized there were three options for calling us. We were on one account, and had given them a different account. And the accounts were not linked. Which for life of me makes no sense. We checked the other account and saw the incoming call at 9:00. And 9:02. Then again at 9:06.... altogether 10 of them! We sent a mail explaining and apologizing profusely and begged them to give us another chance. Ok. We didn't beg. But Darn! If only we'd  done X first, or Y (enough with the variables!) sooner we'd  have caught them before they gave up and left for the day.

We wallowed in our disappointment for a bit. Then Shane went to work, because that's what he does. And I went to my sister's house for margaritas, because she had some left over and I wanted to show  off  my cute hair.

The next day was Friday. Radio silence on their part. We sent one last email explaining the problem, how it was fixed now, and whatever time worked for them we would make it work.

The weekend descended like a great big sucky thing. We were frozen (Ok, a frozen sucky thing)waiting for Monday to come and hopefully bring us news. The whole process of applying, waiting, being rejected,(I'm looking at you Heidelberg and Seattle) waiting some more, getting hopes up, messing up, feeling abandoned, but still hoping. And waiting. Is really exhausting. I said before, I don't know how anyone ever gets anywhere in the process without a Shane. It's like a fulltime job. On top of his full time job. We've been doing this for months and were hoping this last call would finally give us the go ahead to start making plans. And now it was gone. Like Christmas just disappeared . There wasn't even a box to not open.

So we continued on with the days. Doing mundane but necessary things. Cleaning out closets. Grocery shopping. Prepping for AC installation next week. Which is very exciting but also reminds you that you might be here to enjoy it all summer long because you are now at the back of the line and  won't be in Florence until 2020.

Then, this morning I checked my mail, and oh happy day! Just like when you get to the bottom of a box of cereal on a Saturday morning, and despite the colorful picture advertising the fun toy included in every box so you've dutifully eaten 5 bowls, including the sugary dust you shook from the bag, and still there's no prize. You've ingested all those crunch berries for nothing. So you give up, pull the empty plastic bag from the box so you can toss them in the garbage, and there at the bottom of the box is the brightly colored and totally useless plastic toy. Your weekend is suddenly saved!

There in my inbox was Florence. Saying no worries. We don't hate you. It happens. We will set up a new time and let you know as soon as possible. It totally soothed my restless spirit. Shane was equally pleased. And hopefully soon we will get to sit and wait for the electronic bubble sound of Florence calling. We'll be ready. Again.

Thursday, April 14, 2016

More of The Same

After deleting the post explaining the crazy medical treasure hunt we've been on, I thought I'd leave a few educational nuggets here in its stead.

This ARTICLE talks a little about Dr Burt and the procedure. And highlights some of  economical benefits of HSCT has as well.

Dr. Burt does his work in Chicago now. We have applied there, along with all the other clinics. His procedure is different from the one they are running out of the Hutch here. The Hutch is following the BEAM protocol, if you're curious. Florence also does BEAM. Dr. Burt's does not ablate the bone marrow cells. Or as the HSCTers refer to it, it's non-myelo. So its is less arduous, has a faster recovery, and you might not need to re-immunize for all your childhood vaccinations. However, occasionally patients might need an additional dosing of a chemo drug within the first year if there is any disease activity. To rule out this potential possibility many people, me included, try for a clinic offering the BEAM protocol. BEAM has  shown to stop progression immediately. The non-myelo does achieve this as well, but a bit more slowly. I think at about the 2 year mark they are even? But don't quote me on that. Or on any of my spelling of big medical words ar terms. I think I have finally gotten the letter order for HSCT down, but sometimes I still slip.

Seriously, it has been crazy chasing down all the information the various clinics want/need. I don't see how anyone without a Shane on their coordinating/technical team ever successfully apply anywhere. If left only to my own devices, I would have just cried and given up the time I unscuccessfully tried to burn images onto a CD. Or was it  a DVD? I don't know, because Shane did it all. So of course it all worked.  In my acceptance speech I will certainly give him all the credit he deserves. I am still waiting until all the acceptances come in to write it though.

Like I said, Russia will take me in a couple years. Germany says 'Nicht!'. As did The Huch, all three times I begged. The Philipenes say 'yes', or 'si' because most people speak English or Spanish in addition to Tagalog. And we are still waiting to hear what Florence says. And Chicago. Everyone said apply everywhere, take what you can get. So we did. And we will. As soon as all the si's and yes's come in.

Actually Chicago says I look good on paper so they might invite me to come down for a visit and then they would give a final yea or nay. The upside to Chicago is it is not on the other side of the world and insurance might cover the procedure so we would not have to indenture the kids for a year. Good thing we had six of them if we end up going to Florence. at $1500 a plane ticket we migh rethink the whole family vacation thing. And it looks like they suggest you plan on staying about 3 months.

And Italy wrote back this morning they would like me to set up a Skype call with the doctors there  next week. I read it after Shane left for work so I squealed then called him and asked him how I'd do that, I think I have a Skype account but I don't know what the name/number is? I had forwarded the email to him and he already set up the video chat with them. Video chat!!? So I  immediately hung up and stated preparing. First I called the salon and made a hair appointment.  And now I';m making a list of all the questions I might have. And trying to think of how I'll keep the kids quiet for an hour and would it be weird so have Shane on the call too? He's really cute and much better spoken so they might appreciate it, but maybe they'd like to see if I can manage on my own or not. And would that make me more or less likely to get in? Pity points? I'd take them.

Too many thoughts to get through. Good thing I have a week.

Also in preparation, Shane and I went last week to meet with a hematologist here. Though the Hutch did turn me down, the coordinator was super nice and sent me loads of links to studies being done by other facilities and suggested I start working with a hematologist here for follow-up care in the event I end up going out of country. So we met with Michele and  she didn't think I was crazy  but offered her support and services for anything we might need.

 Just to show our lives are not completely consumed by medical stuff, here are the babies, as everyone calls them, on Holy Saturday. I really liked Malachi's thoughtful stare. And his fancy duds.