Whiplash!

Just when you think you know the plan, the plan changes.

As I'd written earlier, my breast cancer oncologist referred me to a leukemia specialist in an out of network hospital (Froedtert, for those in the area), not knowing that any other hospital system even offered treatment for leukemia. And lucky for me, through connections, I found excellent providers at Aurora St. Luke's. While there, I also learned that St. Luke's has been doing autologous bone marrow transplants (using your own bone marrow; usually for lymphoma) for years, but that they don't currently do allogenic bone marrow transplants (from a donor; to treat leukemia and myelodysplastic syndromes). However, with two new doctors on staff, who came from institutions where they did allogenic transplants, they are currently training nurses and will start doing allogenics in January.

However, as I began to connect with others in the area who are leukemia survivors, they all received treatment at Froedtert (obviously, as it's the only one in the area). And all raved and raved about Froedtert and pushed me to seek treatment there. And a few encouraged me to reach out to my insurance company to see if there was somewhere I could go where I wouldn't be one of the first patients receiving an allogenic transplant. I knew that my insurance would likely cover UW in Madison, but I just didn't know if it was worth a 90 minute drive for care. After all, being one of the first patients would certainly ensure a lot of observation, right?

Still, on December 19th, I decided to call my insurance company and see about maybe getting a second opinion from UW or another hospital that WAS in network and had more experience with allogenic transplant.

Unlike my first call in November where everyone hemmed and hawed and didn't think they could get me any information for 72 hours or more, this time I was connected with a Cancer Care Specialist familiar with my case, who was adamant that, with my particularly difficult type of leukemia, I needed to be seen at a Center of Excellence (COE) Hospital. They would pay for me to travel to any COE hospital in the country, but the two closest were UW in Madison, and the Mayo Clinic in Rochester. I pushed back and asked why I couldn't go to Froedtert, emphasizing how disruptive it would be for my family if I were treated or hospitalized that far away. The Cancer Care Specialist, in turn, reminded me that it was "only 90 minutes away." She said she would check with her leukemia specialist and get back to me.

Three hours later I got a call back that they learned that Froedtert had better transplant outcomes than either of the COE hospitals they'd suggested.  They were recommending that I get my bone marrow transplant at Froedtert, and they actually wanted me to immediately switch care to Froedtert and were looking into how to get Froedtert added to their Center of Excellence hospitals, as they were unsure why they weren't already. EEK!

And then there was a lot of waiting and letting things happen behind the scenes.

Yesterday I had an appointment with Dr. Hamadani who is the director of Froedtert's bone marrow transplant program. He was unaware that my insurance wanted me to transfer all care to Froedtert, so was only prepared to talk about the transplant being done at Froedtert. When I explained that I would be transferring all care, per my insurance, he said he would not be my oncologist (as he doesn't specialize in leukemia), but he would see if Dr. Atallah would see me. (Dr. Atallah, incidentally, is the doctor that all the local Froedtert patients I spoke with saw, and who they credit with saving their lives.)

I also met with the transplant coordinators and learned that Froedtert matches on more proteins/HLAs than St. Luke's does, so if my brother isn't a match, they'll have me re-do the cheek swab for more specific donor matching.

I had blood drawn and learned that Froedtert uses a different kind of picc line that only needs to be flushed weekly, so if care transfers there, I'd either need to learn to flush my own picc line or (their preference) have my current one replaced.

And my labs showed that I needed red blood cells (hemoglobin 7.0), so I was able to get that done at Froedtert instead of having to be driven across town to St. Luke's for the transfusion. So many new processes and procedures. It's interesting to see how a different hospital system does things. And another 8 hour day at a hospital.

Today was a morning of phone calls.

1.   I *still* have not received my mail order chemo (Venetoclax), although I should have started on it over a week ago. I am NOT impressed with the specialty pharmacy who didn't call St. Luke's to clarify the dosage (first holdup), or my insurance company to clarify coverage (second holdup), or me to get billing and delivery information (third holdup). After over an hour on the phone answering their annoying questions about how I was feeling about my diagnosis, they finally released the prescription to be delivered "Thursday or maybe Friday." Of course as soon as I learned this, another glitch happened (see below in #4).

2.    I heard back from Froedtert's transplant coordinator. Apparently my brother is NOT a match for me. I'm not sure why no one had told us this yet, but now we know. As mentioned above, I'll do another cheek swab to check for more features to match on. The coordinator has utmost confidence that I will get an unrelated donor match. A group of friends is currently working on setting up a Be The Match Event (bone marrow drive) in Milwaukee. When details on that are solidified, I will share them. Out-of-towners will be able to participate by mail, too. (I am moved to tears every time I think about this.)

3.   St. Luke's called me to see if I was changing providers or not. This was a really difficult phone call for me, as I have no complaints about my care at St. Luke's and all of the providers (doctors, NPs, nurses, techs, therapists) have been absolutely amazing. I know that I am not "firing" them, but am following my insurance company's preference, and ensuring that I get the best possible outcomes with the most experienced team. Still, it felt cruddy to tell them that I was moving to Froedtert.

4.   Froedtert made appointments for me to get my picc line swapped out (Thursday), to set up bi-weekly lab and nurse visits, and to get established with Dr. Atallah. But my initial appointment with Dr. Atallah is scheduled for the day after I am due to start round two of the Vidaza infusions. So I am trying to get that figured out, as I don't want to delay treatment. Froedtert wasn't aware of the start date for my next round, and Dr. Atallah is out today and tomorrow, so hopefully on Thursday that will be worked out. While making these calls, I also learned that Froedtert follows a different procedure to start taking Vinetoclax (including very close watching), and was informed that I should NOT start taking it until Dr. Atallah could review my file and guide me.

5. Froedtert does not routinely schedule visits with cardio-oncology (St. Luke's is well known for its heart care and does things more proactively) so I will keep my appointment for a repeat echocardiogram on Friday at St. Luke's. If that shows no damage, I believe I will only be followed if symptoms appear, but if it does show damage, then I'll need to figure out how to merge two hospital system specialists.

And I think that's it. It's so bizarre to me how there can be so much waiting and not doing a lot, and then BAM! everything happens in a matter of hours.