Tuesday 8/1 - consultation with new doctors (John's Hopkins)

We were scheduled at John's Hopkins just in time for what they call a "multi-disciplinary clinic" which is held once every two weeks. On these days, you can meet with the different members of your cancer team at the same time.

My team is:
1) Dr. Meyer - medical oncologist, managing my chemotherapy
2) Dr. Morris - surgical oncologist, later managing my surgery

Both doctors were very warm and patient with our extensive questions. I'll briefly summarize what we learned:

Consultation with Dr. Meyer

• The slides with my tumor sample had just arrived to John's Hopkins so they did not yet have an independent assessment of the pathology/ diagnosis; however, Dr. Meyer noted that he knows and trusts my doctors at Mt. Sinai. 
• Assuming our second opinion does agree, Dr. Meyer confirmed the cure rate for this diagnosis (70-75%) and the rough treatment schedule (8-9 months in total).
• My chemotherapy cocktail will consist of three drugs: doxorubicin, cisplaten, and methotrexate. These are intended to shrink the tumor and wipe out microscopic cancer cells elsewhere in the body- but, like any chemo, also affects healthy cells and thus has harmful side effects.
• Likely permanent effects: hearing loss, neuropathy (numbness and tingling in hands and feet), and kidney damage (not too severe but does cause "wasting of electrolytes" which probably means I'll need to regularly take supplements). It can also affect fertility, but the chances are quite low: 20-25%
• Additional short-term effects include: fatigue, nausea, ulcers, hair loss
• Chemo will be administered once every 3 weeks: I'll go into the hospital for two nights each time and then go home to rest. Typically, the first week in the cycle is extremely unpleasant and it gradually improves to almost normal before going back, but responses vary a lot by individual.
• There's not a lot we can do to improve my chances of being cured, but he did say keeping on schedule with the treatments is important, as well as keeping hydrated and eating lots of protein, appetite willing.

Consultation with Dr. Morris

• The surgery, then, is intended to cut out the remaining tumor and is often done around the middle of chemo. One advantage of this timing, Dr. Morris explained, is that we can see how responsive the tumor has been to the treatment and tailor the chemo accordingly.
• Unfortunately, it will be a more involved operation than we had anticipated when we thought it was benign (i.e., just doing a bone graft) because a much larger chunk of the pelvis will now have to be removed. We have two main options: 
• replacing the removed bone with a large 3D-printed metal piece 
• replacing it with a similarly-sized bone from a dead body
• For either of these options, the risk of infection is a worrying 25-50% and, in this event, we'd have to resort to a flail hip (leaving much of the bone structure out, thus limiting my ability to walk) or even amputation.
• If the surgery and recovery go smoothly, however, I should be able to walk normally. Still, even in this best-case scenario, it sounds like the end of my running career. Even obediently avoiding high-impact activities, Dr. Morris warned that the new hip would likely start to have problems in around 25-30 years.
• There is some chance with the bone replacement (vs. metal) that it would eventually be more durable, but there's also a slightly higher chance of infection with this option and a longer healing process-- so that will be an important trade-off to consider as we get closer to making that decision.

Next steps

We're hoping I'll be ready to start chemo sometime next week. In the meantime, we're doing a few last preparatory steps: some medical (getting an echocardiogram and a "metaport" placed under my skin for easy drug administration) and some not (setting up a comfortable room and looking to adopt a dog!) Some of the new details are definitely hard to swallow, but we're very happy to be at John's Hopkins and are feeling confident that I'll have excellent care here, including good communication about what to expect- something we've learned is indispensable.

As a last note, I have a quick story to share from our last drive back from Mt. Sinai hospital: 

We had just got a phone call from the doctor while driving--intense news--and were anxious to get back home and decompress (ok, hopefully the border-crossing will be quick!)... as we approached the security checkpoint, though, we met alarmed faces. One guard spoke into his walkie-talkie and rushed off: "We have a gamma 44." The other barked: "Has anyone here had a recent medical procedure?" We started to explain, but were quickly asked to pull over. What?! The first guard came back with a large device used for detecting radioactive materials and around that point, we started to figure it out - was there a bomb in the car? Nope! Just me. Apparently, the injection I got for my bone scan set off their alarms. Radioactive girl coming through! Luckily, it didn't take too long to get sorted out, but there was quite a confusion for a moment there... pretty amusing, in retrospect. 

So there you go- I thought I'd try ending on a lighter note. Thanks again to everyone for the many ways you've been supporting me through this!! ♡