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Friday 5/29/20 - a twist

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May 15th was both the day I discovered I had a tumor (in 2017) and the day I finished treatment (in 2018), so I commemorate this day now with a made-up holiday--Uncertainty Day--to recognize and share the present uncertainties in our lives. It has now been over two years since the end of treatment and I just got back another set of scans: still clear! As if in celebration of Uncertainty Day, though, I also learned something very unexpected... They've changed my diagnosis.  The doctors at OSU obtained samples of the tumor from John's Hopkins and did their own genetic testing. Rather than chondroblastic osteosarcoma, they believe I had a chondrosarcoma, a primarily cartilage-creating bone cancer. In particular, they believe my cancer was a highly aggressive variant called dedifferentiated chondrosarcoma. What does this mean? For one, this likely explains why so little of the tumor was dead following the initial rounds of chemotherapy (low "necrosis")-- and...
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Saturday 7/20/19 - clear scans & a fund raising bike ride!

Hi all, Just a quick update that all is going well. My scans last month were clear and I've officially submitted my dissertation! I defend in September, so if all goes as planned, I'll have my PhD in a few months! I'm also doing pretty well with physical therapy. I continue to limp but am definitely still getting stronger. My physical therapist, Amy, has said a few times that we should get video footage since it's so rare that a hemi-pelvectomy patient can do certain exercises I'm doing now. So yes, lucky me and impressive job by my surgeon, Dr. Morris. Last but not least, I wanted to reach out because Francis is doing Pelotonia, a fund raising bike ride for cancer research at the James Cancer Center (where I go). It's all relatively long distances, which I'm not allowed to do yet-- but Francis is going for a 45 mile ride and could use your support! If you're able to help, please see the link here for more details: https://www.yourpelotonia.org/...
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Saturday 4/6/19 - new info & resources from The James

I've finally shifted my care fully to The James Cancer Center here in Columbus and I'm very pleased with the quality of care from my new oncologist, surgeon, and all the staff. I've received some mixed news during my recent appointments but I feel at least that I'm getting a more thorough education about my condition and what I can still improve and what I can't. First, on the oncology side, they printed out some articles for us on osteosarcoma survival rates and walked us through it (finally, data!) For young osteosarcoma patients with poor response to chemo (as I had--only a 35% necrosis rate, compared to >90% that's considered "good"), the overall chance of recurrence in a 5-year span was close to 50%. This suggests worse chances than we had thought... which is of course disconcerting... but, it's also a good sign that I haven't had a recurrence yet. My hip and lung scans of the past month were clear. This is especially important becaus...
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Sunday 12/8 - no signs of recurrence

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I recently had scans of the most common sites of recurrence (hip and lungs) and got the very welcome results that everything still looks fine! Our anxieties were heightened this time due to some potentially concerning symptoms in the past months, e.g., a lingering cough, so this came as a big relief. For those who don't know, I'm also enjoying being back to my research--planning to defend my thesis this upcoming year. And as for physical therapy, I can now walk short distances with no assistance and use just one crutch or walking stick for longer outings. Feels good to be back to my normal life. Oh, and I have some hair now! I'll update again in a few months when I have the next set of scans. In the meantime, I'm wishing you all a wonderful holiday!! Aren't we lucky to be alive?
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Tuesday 8/14 - surgery went well

Thank you all for your thoughts and prayers. ♡ The meddlesome screw was removed yesterday, with no complications. I was exhausted and intermittently very nauseous yesterday, but my pain has been managed well- and I'm feeling much better today. I was even allowed to go home last night, i.e., zero overnights in the hospital... What a difference from the surgery last November!
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Wednesday 8/8 - deportation & upcoming surgery

I'm happy to report the dreaded port is no more... I've been deported! The operation, on Monday, went smoothly and it barely hurts now at all. I also had a slew of follow up tests, which showed fairly minimal hearing loss from the chemo and, most importantly, no signs of recurrence. Based on my healing, I also just got the okay to use only one crutch! One piece of less positive news, however, is that I've been having some discomfort and we discovered that there's a screw from the hip surgery that's too long. Dr. Morris decided that it's a risk for infection, so she wants to remove it right away, i.e.,  this Friday (**update: now Monday**). I'm a little apprehensive but I do believe it's for the best-- and, thankfully, the surgery will be fairly minor. It requires general anesthesia but should only last 30 minutes to an hour (compared to the original 12-hour surgery) and I'll most likely be released from the hospital the next day. Hopefully it go...
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Wednesday 6/13 - follow-up tests & healing

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Last week I had follow-up tests (MRI, lung CT, and hip x-ray) and got the results: no sign of recurrence! Both doctors were also very pleased with my progress in recovery. In fact, Dr. Morris said that 2 of the 3 areas connecting cadaver bone to mine are already fully healed-- which means I can start to put weight on my leg at a slightly faster rate than expected. I'll be going back in two months for another set of tests and, if everything looks good then, I should get the OK to use only one crutch. While I briefly had them both in the same room (that's never actually happened before), they indulged me in getting a group picture: On the left, my surgeon, Dr. Morris; on the right, my oncologist, Dr. Meyer. Great team.
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