Sorry for the hiatus. But frankly, there has not been much to report. Which is good news. Just lazy summer days with few appointments or obligations requiring me to leave the cool confines of my air-conditioned dwelling. I did get some discount plants at the hardware store. Which are great, because most plants probably view my yard as the place where nice plants go to die. So getting ones that are already mostly dead saves us all time, water, and money. I didn't know there was a life support section to the garden shop, but a neighbor clued me in, and one day the bug got me to do something to green up my yard, so I stopped by and found some sprouts in need of some TLC. And a couple bags of potting soil. The babies were very excited to help plant and water. And since, they have been excited to uproot, de-blossom, or just rudely knock over the planters. Every day. Like it was an item on their chore chart. The ONE they remembered to do. I kept watering them, the plants not babies, anyway and one day, I was pleased to finally see the hint of a pink fuchsia blossom. And then, the next day it was gone. I found it plucked, abandoned, and withered on the patio. I guess it serves it right, drawing so much attention to itself and all.
But a few weeks later, we went to Chicago, the kids went to Grandma and Grandpa's, and the poor struggling shoots had a chance to grow and blossom. It was only three days but it seemed to be just the respite they needed as I now have blossoms and color bursting forth from both planters!! The fuchsia might need some therapy, as it is still keeping to the shadows. But the other plants give me hope it will come around soon.
And then for the bad news, as if tortured plants were not enough.
Like I said before, we had planned on making our short trip as much like a vacation as possible to a) mitigate any bad news we might be bringing home and b) because it had been about four very full years since we had taken a vacation sans kids. So we splurged on a room at the Four Season's, complete with massages and room service. And then, curtesy of the staff, cocktails in the lounge.
We only had a few appointments, over two days, so most of the time we just got to relax. Except the MRI. It was scheduled at 4:00. So at three thirty we walked the eight blocks to get there and I got in the line to register. It was at that precise moment we realized we had forgotten the paperwork the doctor wanted filled out by the technician doing the MRI. So Shane hoofed it back to the hotel and I kept encouraging new patients to go in front of me, keeping me at the end of the line for as long as possible. Until I couldn't because there weren't any more. So I had to finally fess up. I think Shane returned just as I started talking, but it didn't really matter. Apparently, the facility had called my cell phone the day before, which had been off for the flight. We arrived late to the hotel so I didn't even notice a call had some in until the next morning. I didn't recognize the number and got weird ringing when I reverse called it.
Well, it had been the MRI facility confirming my appointment. If the call is not answered and confirmed, the computer drops you from the schedule. So I was no where on the day's list and it was already 4:00.
The receptionist was super nice and said maybe they could squeeze us in anyway. So we sat down to wait. And wait. For over two hours. Which in the scheme of the applying for HSCT process, was a drop in the bucket.
Finally, I got to put on hospital garb and wait in a different waiting room. And met another applicant there to see Dr. Burt. Then into the machine I went. It was the longest MRI I've ever had. I actually got bored. They had heated blankets, just like at home, but the machine made new and stranger sounds than the one here. So it took longer for me to find my rhythm and just relax. Finally I did, and even started to dream. Then it was time to come out for the shot of gadolinium, and back in for the final scans. We finished at 8:00 and headed back for dinner.
The next morning we headed to the hospital for our appointments with the doctors. Our first one had been scheduled for 9:00, but got moved to 1:00. So we had another leisurely morning. The first morning I had woken to the sound of foot steps in the hall and thought,
'Kids are awake. Must be time to get up.'
Then I realized where we were. Rolled over and waited to wake up until our coffee was delivered. Because, what's the point?
Again it was a very short walk, which was nice when Shane had to sprint back to get MRI forms. I had been kind of worried about walking around the city, as it was supposed to be near 80 the days we were there. But I was very pleased to find the city was very shaded by the tall buildings and there was usually a nice breeze so my legs didn't get turned to jelly. AND, no hills!!! So walking was not a problem at all. Though we did no do on any crazy long hikes. So to the hospital it was.
It felt pretty unreal to be waiting to meet Dr. Burt. I mean, I had heard about and had been following his research for over a year. It felt like meeting a celebrity. And WE had an appointment with him.
I even took a picture of Shane waiting in the waiting room, but it seems my gadgets are not speaking to each other ONCE AGAIN! so I'll have to wait til another time to post it. But I wanted to document such a momentous occasion. Without coming across as a creepy stalker. So a waiting room pic seemed a nice compromise.
Finally we got called back. Once in the room we a still had window of emotional space to prepare for what may, or may not be the outcome. Almost like waiting for the judge to deliver his verdict, we sat and joked about how we might react to the news. I wondered if I'd suddenly realize how much I was wanting and counting on getting accepted. And I'd break down in uncontrollable sobs. Which would work for good, or bad news. I'm not really a crier, except funerals or watching my little girls ballet recitals. But I really didn't know what I may have not been allowing myself to admit or what my response might be. And 25 years worth of pent up emotions could be a lot. If they were there.
The nurse took the usual vitals. Then we waited for the knock on the door. Which came, and Dr. burt entered without any fanfare. It felt strangely like a casual acquaintance coming to visit.
Dr. Burt was very warm and down to business. Which I appreciate. We were told to bring the copies of the MRI from the previous day, but apparently it didn't matter because he had already looked at them.
"So. I looked at your MRI" he said, after introductions.
"And, frankly, you have a lot going on. Four enhancing areas just from the last few months."
(Only new, like up to 12 weeks, damage shows up as enhanced with the gadolinium.)
"There is quite a bit of atrophy, which we know cannot be reversed with any therapy. So there's also that."
At this point, Shane was expecting him to say, HSCT would be too much for my brain right now. But he didn't. Instead he said,
"You need HSCT."
I think it still might not have sunk in. I didn't cry. I agreed I needed it. He said he would do it. We were IN.
After reading so many people's rejection posts on the forum, I felt like we had just gotten admitted to a super exclusive club. Dr. Burt is very selective in who he thinks could benefit from the procedure. And I was one of them! He does treat patients off-study on a compassionate basis, but one hall mark they look for is inflammation ( enhanced lesions). Meaning, there is still bad activity in the brain, which is damage happening, and though usually not desirable on MRIs, the BAD NEWS, actually resulted in GOOD NEWS!
The rest of the visit with him was mostly informational. We met the nurse who will be our contact person and will investigate the insurance benefits for us. And if insurance balks, Dr. Burt will do a peer to peer review with them. And hopefully that will end it.
Then we left for lunch. We didn't have a ton of time, but we found a cute place for tapas, which was also really tasty. So tasty, that we decided to go back for dinner so we could try more.
Then back for a meeting with the neurologist, Dr. Balabanov. Who we also both really liked. He had two trainees as well, so we got to enjoy all the probing questions he would ask them, in addition to his questions for me. I really liked his approach, and mild accent. And the informal back and forth that gave you the feeling that it was all in fun, but you knew he was watching carefully to find the evidence he was looking for. But it wasn't like he was looking to see if I were guilty of something, so I didn't feel unnerved.
The tests went fine. Even the walk up and down the hallway. Seven times test. But he found enough things he was looking for -the MRI is only half the story- and concurred with Dr. Burt's conclusion.
Then he called me stubborn. For not being on any drugs.Which I didn't mind. And asked how I ' Came to dees weesdom' of having babies and breastfeeding for natural therapy. And why, since I was stubborn and wouldn't take the stronger drugs was I now willing to take 20ml of cyclophosphamide, just as an appetizer.
I told him because it had the best ROI, and is my last, best hope. So "Carpe IVum!"
He was satisfied. (More good news.)
However (dun dun dun, bad news is coming..get ready for it...ok not really that bad)
He wants me to take steroids while we sort out a date for starting treatment to prevent further irreparable damage and avoid a crash. Or, if I wanted less side effects, I could take Acthar, the god of expensive drugs. I had read about it on Marc's blog so was prepared when my neurologist said we'd have to go through some hoops with the insurance company. Apparently $78,000 worth of hoops. Just another demonstration of HSCT being very cost effective for the insurance companies. My neurologist did agree the side effects are far preferable and she would recommend to patients if it were not so expensive.
Then I started reading up on dosing and injecting and all that. It is given intramuscularly, though it looks like there might be a subcutaneous version, but not sure which formulation I get. The latter would be no big deal, but the IM practice video made it look a little involved. 'Stab the area planned for injection. Draw back he plunger to check for blood. If blood enters the syringe DO NOT INJECT. Remove the needle and pick a new spot and repeat. Until you are sure you are not injecting into a vein. Repeat morning and evening for 2 weeks.'
With the IV steroids I could just go and get it done, no insurance hoops. But I would have to go there every day. For three days, or whatever the Dr says. So, it does involve leaving my house. I told the Dr if we don't get insurance approval by Friday, tomorrow, I'll go the IV route. I have lots of house projects if I need outlets for the increased energies.
So we wait for insurance to issue it's decrees on both petitions. Hooray, more waiting. But hopefully for the last times. Once we are done with this, other than the follow up care here and the annual checkups in Chicago, my medical outings should be greatly decreased.