Rachel had a check in with the radiation oncologist today. The CT scan showed that the seroma (fluid build-up in her spine from the surgery) was stable from the last scan, so no radiation treatment adjustments need to be done.
We also weren’t sure how many treatments Rachel needs, as we’d heard 10, then we heard 12, then we heard 10, then we heard 10-12… We confirmed with the doctor today that Rachel’s last treatment is scheduled for Monday, October 30 – so a total of 10 (if you include the previous 25 back in May/June, a grand total of 35.)
We arrived in Boston on Monday, October 16, for the start of Rachel’s post-surgery radiation treatments. The proton (radiation) machine ended up having mechanical issues that day, so she had to wait until Tuesday for the start of her treatments (meaning another day will be added on at the end, so her last day will probably be November 1, barring any more delays or treatment changes.) We had a relaxing day at the apartment on Monday, ordering some Thai food takeout and taking a walk along the Harborwalk trail, which is right outside our apartment.
The CT scan and MRI that Rachel had earlier this month showed that she had a collection of fluid called a seroma where part of her spine was removed. The surgeon said this is expected and he sees it all the time and that it should shrink on its own over time. The radiation oncologist sent Rachel for another CT scan today to make sure that it hasn’t changed significantly since the last scans; if it has, they will need to adjust the location of the radiation treatments. The MRI was clear: no cancer showed on the scan.
Our apartment is really nice and has a beautiful view of the harbor. Someone donated tickets to Saturday night’s Bruins game to the patients staying at the apartments and we were able to get a couple of those – seats are in one of the executive suites, no less. 🙂
Rachel had an appointment with her radiation oncologists down in Boston yesterday. They went over how she’s been feeling since surgery and asked about any long-term effects she’s experiencing from either the previous radiation or chemo (so far just lingering ringing in her ears from one of the chemos and still some numbness in her chest and abdomen from the tumor itself compressing the spinal cord before it was discovered and removed back in November of last year.) They also went over the risks of radiation again, since it’s been a while since she last had radiation (June of this year.) In addition to the skin irritation that’s almost certain to happen, there’s also risk of lung damage (because the location of her tumor was near her lungs) and secondary cancer (ironically, the most common cancer caused by radiation is the cancer she’s being treated for: osteosarcoma.) Their biggest concern is possible damage to her spinal cord. The amount of radiation she’s had so far (5 weeks, or 45 Gy, for those of you who know about radiation unit measurements) has been deemed to be safe for your spinal cord. Above that poses a much higher risk, but with osteosarcoma, the risk of not doing the higher dose (over 60 Gy) is worse. The doctors ordered an MRI so that they can be sure they know exactly where the spinal cord is so they can minimize the risk of damage during radiation, since she hasn’t had one yet post-surgery. We just heard today that this is scheduled for this Saturday (here in Maine.)
On a lighter note, we headed to Boston early yesterday so that we could spend some time at the aquarium before her appointment. We also tried out the famous Legal Sea Foods for lunch (highly recommend, by the way.)
The place where we’ve been staying while in Boston doesn’t have any apartments available during Rachel’s radiation treatments next month. I just got word that we’ve secured an apartment with another organization during our stay in Boston, so that’s a big relief. It’s not conveniently across the street from the hospital, but it is a one bedroom apartment with a kitchen and washer and dryer and has a free shuttle to and from the hospital that runs every 15 minutes – and the apartment is right on the water. 🙂
So, we knew that Rachel would need to have a couple more weeks of radiation in Boston, but we had previously been told it wouldn’t be until the end of November or beginning of December. We just found out today that they want to start just six weeks after surgery. She will have 12 treatments (2 days more than we thought) which run Monday through Friday, every day, from October 16 through October 31.
Now we’re just trying to secure some housing for Boston again. The place where we had been staying might be booked, since we didn’t know that we’d need to be going back this soon. Stay tuned…
After nearly 3 weeks in Boston, we are finally home. The 2-hour ride was uneventful for Rachel; her back and neck handled the sitting fine.
We stopped at Texas Roadhouse for lunch on the way home. We mentioned that we were celebrating Rachel being just declared cancer free, causing the waitress to get all teary-eyed and high-five Rachel. When we were nearly done eating, the waitress came back, dragging a giant seat with a saddle, followed by most of their staff. Rachel got up and sat in the saddle of honor while the waitress announced to the whole restaurant that she was celebrating being declared cancer free and they all did the Texas Roadhouse “yee haw!”. When the waitress came with the bill, she looked at Rachel and said, “yours is on me.” ❤ She also said, “just so you know, we all had to go in the back and dry our eyes there for a bit. And all 3 of my other tables have commented on how strong and brave you are.”
Rachel had her post-op appointment with the orthopedic surgeon today. He said that everything is healing nicely; the X-Rays taken after surgery looked good.
The pathology report is back. There were microscopic tumor cells, so it’s definitely good that Rachel had this surgery. The surgeon was able to remove all of the cancer and achieve “negative margins”, which means that no cancer cells are seen at the outer edge of the tissue that was removed – which is the goal of any surgery to remove cancer. That means that Rachel currently has “no evidence of disease” (aka NED), which are the words every cancer patient waits to hear. ❤
Next steps are continuing to heal from this surgery and at some point likely a couple more weeks of radiation, just to be safe.
Rachel got a voicemail early this morning from the plastic surgeon’s office saying that she could come in and get the other drain removed at 11am. Such a relief for her to not have to be attached to that!
Her plastic surgeon was back today, so she was able to see him this time. He was very happy with how things turned out (and was even taking pictures for his records.)
So, Rachel’s plastic surgeon was out of town last week and supposed to be back in town today; however, his flight was delayed and wasn’t able to make it back today so Rachel saw one of his residents.
The doctor removed one of her two drains, saying that they would call us to make an appointment for the other one to come out. When I asked about when that would be, she said probably next week. I pointed out that we were planning to go back home to Maine this Saturday, so she said that she’d talk to the surgeon about removing the other drain later this week. We really don’t want to go home before that comes out – or travel back and forth from Portland to Boston any more than we have to so soon after surgery, so hopefully they will accommodate. Still waiting to hear back. The doctor didn’t really do or say anything other than remove the one drain. Rachel said it didn’t hurt, but felt really weird having the fairly large tube being pulled out of her back.
Rachel’s pain gets a little better each day. She’s able to get in and out of bed by herself and has gone on a few 20-minute walks. Going up and down stairs are no problem either. She doesn’t need pain meds nearly as often as she did the first few days after surgery. Her biggest challenges right now are sitting up in a chair and reaching; her neck and shoulders are still really stiff and sore. We’re hoping that sitting gets easier for her before we head back to Maine on the 23rd. She’s sitting up playing League of Legends on her laptop right now, so her neck and shoulders must be feeling at least a little bit better right now. 🙂
Rachel has her follow-up appointment with the plastic surgeon tomorrow; hopefully she’ll get the drains removed then.
Rachel Strong 