Health Updates

Hello, Francis again. Jane continues her recovery at Johns Hopkins. She was one night in the ICU after surgery for closer monitoring then moved to a normal hospital room, where she has resided since. All things considered, so far the recovery has gone quite well. She has had pain, especially as medicines have been changed and new equilibria reached, but it was a major surgery and so some pain is pretty unavoidable (one doctor actually mentioned that this surgery was basically the largest orthopedic surgery they do!). Yesterday was a big day. The epidural was removed as well as the intravenous pain medicine pump - she went from two pain buttons to push to zero. Her pain meds are all oral now, which is good because that is what she will go home with. She also had her first physical therapy yesterday; after being on bed rest and horizontal for 5 days, she sat up (with assistance) on the side of the bed. This activity, combined with the changing of the meds, caused a brief period of pret...

Francis here. A long day for all of us but mostly a blink for Jane. She is awake and groggy as she rests in the ICU, where she (and I) will remain the night for monitoring before moving to a regular room tomorrow to recover. We spoke briefly to several of the surgeons and everything went well and as planned. The tumor has been removed as well as a good chunk of the left hip. The hip joint has been replaced with a metal one and the hip bone that was removed replaced with bone-bank hip. It was almost exactly 12 hours from when she went into the OR at about 9:25 am this morning til she came out at a little before 9pm, with most of that time spent on careful reconstruction of the removed tissue and bone. For now Jane feels pretty funny from the numbness of the epidural and lingering traces of anesthesia, but she doesn't really have pain and is quite stable. Hopefully she can get some restful sleep tonight. We're feeling very blessed and grateful to have such good support here a...

Today we met with my surgeon, Dr. Morris. Here's what we learned: The surgery will start early next Wednesday (the 15th) and will last about 12 hours. After putting me under anesthesia, Dr. M will make an incision from the back to front, remove a large chunk of my hip (left ball and socket and some of the wing), insert a similarly-shaped piece of cadaver bone, add in a metal hip replacement , and fix it all up. Surgery Type - This ("allograft") surgery has the highest chance of being functional and durable for many years, as compared to the fully-metal-hip or flail-hip options--but even this is expected to be fairly weak: I should expect to have another major surgery if I live a normal-length life. The downside of the allograft option is a somewhat higher risk of infection, but Dr. M did recommend it since I'm low-risk in most other ways (young, light-weight, non-smoker, etc.) and have many hopefully-hip-using years ahead of me. Risks  - Dr. M is optimistic but, ...

I haven't updated in quite a while--which should be taken as a good sign. I tend not to update if things are going as planned! Indeed, we've all been grateful for how smoothly the last few chemo rounds have gone. The last cisplaten/doxorubicin round (started 9/24) was especially remarkable: like night and day, comparing to my experience the first time. Amazingly, even through the period of lowest energy and discomfort, I felt at peace-- and managed physically much better too: very little nausea and almost no extra counter-medications needed during or after. It's hard to say what made the experience so much better but I suspect having begun some meditation practice since the first round and knowing a little more what to expect both played a significant role. It hasn't all been smooth sailing though, as I alluded to in the title... when you're dealing with drugs as powerful as those in chemo, the side effects can hardly be called "side" anything. At times,...

I'm just getting out of chemo round 3 and doing pretty well. I just thought I'd share the treatment schedule for those who were wondering. The chemo switches between two cocktails: 1) doxorubicin/ cisplaten, and 2) methotrexate. The latter is a little easier to tolerate so there's a shorter recovery time. This is the plan for now but we were warned it's very tentative: D/C (3-wk recovery) M (1-wk) M (1-wk) <= just finished this one! D/C (3-wk) M (1-wk) M (2-wk) surgery (2-wk) M (1-wk) D/C (2-wk) M (1-wk) D/C (2-wk) M The difficult undertakings in the world all start with what is easy. The great undertakings in the world all begin with what is small. So yes, continuing on the taoist theme- we're taking it one step at a time. Another step worth highlighting, though a couple weeks past now: hair loss. I'm officially a bald lady! I was lucky to have a wonderful crew of visitors at the time that my hair started falling out more heavily, so it m...

I've taken much solace in Taoism and, though it strays from my usual expository style, I thought I'd share a thought it inspired: I observe that people often use terms like "struggle" or "fight" in reference to coping with cancer. Yet, my goal is to struggle as little as possible; and rather, to calmly endure. The real challenge I see, the only aspect truly under my own control, is to quell my fears - and the pumped-up warrior mindset does not lend itself to that end. Thus, as with much of life, the ideal to me is not to try; just to do.

Jane got the call for the chemo Monday evening (8/14) and by 5 am last Tuesday, the actual chemo was underway. The insertion of the lines into the ports was pretty unpleasant but the presence of her dad and Francis and Molly helped her through the worst. She arrived home Thursday evening, very weak and tired, but now, beginning the second week after starting chemo, she is much stronger, walking around the house without crutches, and focusing on maintaining weight. Francis had to return to Columbus on Saturday to begin his studies but he'll be visiting again soon. Since Francis left, Samm and Yihana and Molly have visited too and sweet Kyra spends a lot of time with Jane sleeping on her bed. - Betsy