tom's blog

Chemo, and the start of radiation

Anna had heavy rounds of chemo on both Saturday and Sunday. Her body handled it reasonable well, but she definitely had the normal side effects. While the medicines they can give to treat nausea, etc are very helpful, the side effects are definitely still there. Being the weekend, i was able to spend quite a few hours over there on both days. We had a really nice time together. We had a few good laughs, a few sad moments, and a few conversations we really shouldn’t need to have at our age. She's definitely getting more comfortable over there, but it still doesn't yet feel as comfortable as St. Barnabas. I'm not sure if it ever will, but Hackensack is the right place for this procedure, so we'll have to make it work.
Today was the start of radiation. She has two sessions a day of total body irradiation from now until Thursday. Then Friday, is one more round and then the actual transplant. She was in a fair bit of pain today, more than I’ve seen in quite a while. She’s been battling the nurses a bit for the type of pain meds that she prefers. The Doctor’s prescribed her with something else, which is helpful but not as good as the other stuff. Hopefully, they’ll get that sorted out tonight or early tomorrow, as she definitely needs something stronger and quicker. The current stuff is administered as a pill, so it takes a while to work its magic, and sometimes waiting isn’t really an option.
TJ’s been handling things pretty well. He talks to her on the phone a few times during the day, and we try to use video Skype most nights. Unfortunately, it’ll be a little while before he’s able to see her in person again, so the video chat is the best thing for everyone.
Thanks everyone for the support.

Another chapter begins

Yesterday, we had an early morning consult with the primary transplant doctor. We were over there around 7am and spent a bunch of time filling out paperwork. Some of it was real gloom and doom consent form type stuff. Additionally, there are a few different tests that she'll participate in. Most of it is just related to tracking/monitoring her overall progress. One item had to do with an alternate way to take an already approved medicine (pills versus IV). In general, given that you can opt out at any time, we were in favor of participating in as many things as possible. Given that the only way the medicine can advance is to run further tests, I thought it would be good to help out as much as possible. Her treatment wouldn't be as advanced as it is, if prior folks weren't willing to participate in these tests. One of Anna's concerns had been with regards to getting mouth sores, and while this is definitely still possible (and likely), due to prior testing, it's much more controllable than it was in the past (same goes for nausea and pretty much everything else). After we got through the forms, we were able to spend some time with the doctor to review the process and talk about what lies ahead. It was a good discussion, and the doctor was pleased with her current condition. All in all, I think she's going into this thing in pretty good shape. Her weight is reasonably close to normal and she was able to build up some strength over the last few weeks. She managed to stay out of the hospital for a solid 6 weeks or so, which was pretty impressive.
After that appointment, she had surgery scheduled to insert a triple lumen catheter in her upper chest area. Given the amount of medicines they'll be putting in her, and the amount of blood they'll be taking out, they wanted this triple headed thing. She's had a port since the beginning, but that one is a little different as it sits below her skin. You can see a slight bump and scar tissue if you look for it. This new thing is quite visible and sticks out with three tubes. It's a little awkward, but this should be removed somewhere around the time that she is discharged, so hopefully she won't have to worry too much about care/cleansing on her own. The surgery itself was pretty quick (probably 45 minutes in total that she was in the operating room), but we waited a few hours before it got started and then some more time when it was all done. All in all, it was a pretty long day.
Today (Friday) was the day for her to be admitted to begin the transplant process. The hospital called around 4pm, and let us know that the room was ready. We were able to take our time, eat dinner, and then head over. Leaving home was pretty hard. Anna's goodbye to TJ lasted quited a while, and everyone but TJ had tears. He was saying "it's ok Mommy, don't cry"... which, of course, made us cry a bit more.
She was admitted when we arrived and we were able to go directly to the unit which specializes in this transplant process. They initially said she might spend the first few days on the normal oncology floor, but thankfully, she was able to go directly to the room she will have for the entire process. She was able to put up a few pictures and get settled in while I was there. It's a decent sized private room. The entire unit is folks going through something similar, which is nice as the nurses are really specialists, but it is a bit depressing to see some of the other folks. In the past when she's been admitted, she was always feeling crummy and a trip to the hospital would make her feel better. Now, she actually feels pretty good and knows that they are about to make her feel crummy. I think she realizes it's another step in the process  that she has to go through, but it is tough.
Tomorrow will be the start of her chemo treatments, then Monday will start radiation, and a week from today (Fri Apr 30) will be the actual transplant. She's strong and she'll get through this..... warrior style...

Almost There

It’s been a crazy couple of weeks.
Anna has been back and forth to the hospital a few times over the last few weeks for check-ups, another round of chemo, and a variety of other things. Thankfully, everything has been done on an outpatient basis, so it’s great to have her at home. She’s been able to build her strength back up, and if it weren’t for the lack of hair, she really looks pretty close to normal. I don’t know her exact weight, but it has to be pretty close to her normal weight.
Teresa, the lady who had been staying with us, had to return back to the Dominican Republic. It’s a bit of a long and odd story that’s probably not appropriate for the blog, so we move on. My mom wound up coming down this past week on no notice, so it was great to have her help out for the week. After a few possible new candidates, another family friend, Emma, wound up accepting the responsibilities and has moved in with us for the time being. She’s only been here a day, but so far so good.
The schedule changed a little bit since I last posted, so as of now she’ll be admitted on Friday April 23rd. She’ll have a surgical procedure on April 22nd on an outpatient basis, and then the 23rd will start up the real process. She’ll have about a week of radiation/chemo and then the transplant process. This schedule looks pretty firm at this point, but it’s all subject to change.
I think we’re both a bit nervous about the procedure. We know it’s the right thing to do, but the emotions have been pretty high lately. Anna and I have been spending some great time together though. We’ve really made an effort to talk a lot more and spend more time together at night. I love her with all my heart and can’t wait to get through this whole procedure. The next 4-6 weeks will be a bit crazy and I can’t wait to look back upon this time.
Once she checks in, I’ll start posting pretty regularly so check back often.
See ya.