We left the hospital around 4pm this afternoon. Rachel’s pretty exhausted, between the chemo and the anti-nausea meds. She’s generally pretty out of it and sleeps the whole time she’s in the hospital and for a few days after returning home.

Rachel started another round of cisplatin and doxorubicin today. Cisplatin is the one that makes her so horribly nauseous for so long.

Boston requested another full-body bone scan, which they did today. Preliminary results show no spreading, cancer still active at the original site.

One of the oncologists told us today that he thought radiation would start around “week 23”, which would be around June 23, rather than in a month or so, which was the impression Boston gave us, so we are pretty confused.

Rachel had her official 2nd opinion visits in Boston today. She met with a neurosurgeon at Boston Children’s Hospital, who said that from a neurosurgery standpoint she doesn’t need another surgery.

Then she met with a sarcoma specialist and a radiation oncologist at Dana Farber, who said she needs surgery to remove the remaining cancer cells in her spine and radiation treatments. They strongly recommend proton beam radiation, which is only done at Mass General. Proton radiation is more precise and doesn’t have the “exit dose” radiation that traditional radiation has. Given that her heart and lungs are on the other side of the cancer cells, limiting the exit dose is really important.

Dana Farber didn’t specify whether she needs the surgery at Mass General or if it could be done in Portland, but did seem to imply that it might be easier to have everything done at Mass General, and indicated that it should be soon – within the next month or so. Of course, since the treatment will be done at Mass General and not Dana Farber, these doctors that we just met (finally, after pushing for the appointments) won’t be the ones treating her and we’ll now have to wait for information from Mass General.

The sarcoma specialist did mention that Rachel shouldn’t have the final doxorubicin treatment that’s in her treatment plan, since she already had one treatment of that back in December when they thought she had the other cancer. She also mentioned a medication to protect her heart from the doxorubicin should start to be used going forward with future rounds of doxorubicin. They also mentioned referring Rachel to a genetic counselor once the genetic testing results come back because approximately 10% of osteosarcomas are genetic – which would put her at increased risk for other cancers and could also mean we should have Rachel’s sisters tested as well.

We got home around 11:30pm last night. Rachel’s methotrexate level came back at 0.11 after 72 hours, when it needed to be less than 0.1. We had to wait another 4 hours and have them recheck; it came back 0.09 after that test so she was able to be discharged. She was really upset when it came back 0.11 and couldn’t go home. It’s so frustrating to have to sit in the hospital, waiting and waiting.

Rachel has been handling the nausea better this time around after getting the full range of anti-nausea meds. She’s still been tired, but not as bad as last week. Her methotrexate level was much lower after the first day, so that’s probably why she hasn’t been quite so exhausted and out of it this time around.

One of the nurses requested to have Rachel as her patient because she likes her so much; apparently they fight over who gets to have her. ❤

The chief operating officer of my company (my boss’s boss’s boss…haha) stopped by the hospital with dinner last night. His wife made yummy enchiladas – much better than hospital food, which we’ve pretty much given up on at this point.

Today Rachel got a visit and a gift from my aunt Cecile and uncle Duane, who were in town visiting my cousin. 🙂

Rachel found endless entertainment the other night by watching this owl gif and other owl pictures. Must be some good meds…

Rachel’s back in the hospital today for another round of methotrexate. They decided to start it a day early just to make sure it’s cleared her system by the time she needs to head down to Boston next week for appointments – which means she only had 2 full days at home before coming back here. They’re planning on throwing all the anti-nausea meds at her this time after what happened last week, so that’s good, at least.

Rachel was visited by not just one, but two dogs this time, both dressed in their Valentine’s Day finest (a tutu and a bandana.) Also note the lovely Valentine pillowcase that she got from the hospital. 🙂

 

Rachel was still feeling pretty awful yesterday, but her nausea is better today. She’s still really tired.

With methotrexate treatments, she gets the chemo on the first day and then just has to wait in the hospital until it clears her system. They check her blood every 24 hours (more often if she’s getting close and might be able to go home sooner.) After the first 24 hours they want the level to be less than 10 and hers was 26 – probably explains why she was so out of it and couldn’t keep her eyes open that next day. They increased her fluid rate to help it clear her system better. After 48 hours they want it to be less than 1 and after 72 hours and in order to go home it needs to be less than 0.1. Hers was good to go home this afternoon and we left the hospital around 4:30pm.

We got to our apartment and the landlord hadn’t had anyone plow our parking lot (looked like someone had plowed early in the storm and didn’t come back even though it was a huge storm that even caused my office to close, which is extremely rare.) Rachel had to climb over a snowbank to get into the apartment while feeling exhausted from chemo and then Caitlyn and I had to shovel so that I had a place to park my car so it wouldn’t get towed on the street. So annoyed…

Rachel’s ANC (absolute neutrophil count – a type of white blood cell) was too low for chemo when they checked on Tuesday. They rechecked again on Thursday and the level had gone up enough that she was able to start chemo yesterday. They are going to go back to using the neulasta shot after the cisplatin/doxorubicin rounds since it took longer than it should to bounce back.

This round is her first round of methotrexate. We had been told that this one doesn’t make you feel that nauseous and that people usually feel okay on it. They didn’t give her as much for anti-nausea meds since it usually doesn’t affect people as bad. She was really energetic yesterday and excited to get another round down, thinking she’d feel okay for this one – after feeling really nauseous for about 10 days after having cisplatin. However, she felt really nauseous and was so tired and out of it that she couldn’t keep her eyes open. TJ was in town and visited today but she slept through the whole visit. He stayed by her side for hours while she slept though. ❤

One of the nurses said to me, “She’s just the best. We all love her.” Awww. ❤

A few weeks ago I asked a friend from work (Kristi) for some guidance on a quilt that I wanted to make for Rachel. I wanted it to be in the sarcoma awareness color (yellow) and have a yellow awareness ribbon as part of the design. Rachel had picked out a quilt design she liked on Pinterest, but I needed help in translating the photo of a square quilt into a proper size rectangular quilt and Kristi has vastly more quilting experience than I.

Not only did I get help in the design of the quilt, but Kristi organized a sewing bee after hours at our office last month, enlisting the help of probably more than 20 people, many of whom donated yellow and white fabric that they had on hand. Unfortunately, I was in the hospital with Rachel (for chemo) the night of the sewing bee so I was unable to attend.

Kristi has been working on finishing up the final pieces of the quilt at home and today she brought in the finished quilt (or nearly finished – there is still some tying to do and sewing down of the ribbon in the center, which she left for me to do), appropriately named, “Many Hearts Help With Healing.” There was enough extra fabric to make a framed piece, as well as enough for the start of a pillow or two.

Rachel was so excited to get the quilt today!

Rachel’s hemoglobin was too low again so she had another blood transfusion at the doctor’s office today. She felt much better after the transfusion; she was pretty exhausted before it.

Rachel’s also been having some pretty awful ringing in her ears, caused by the cisplatin treatment; it’s finally starting to get a little better.