Not getting to the computer much

The stuff they have me on makes it difficult for me to focus so I'm not online much. I hope the antibiotics are working, but I feel pretty nauseated, weak, dizzy. Down 7 or 8 pounds this week.

Mostly good news

I saw the surgeon on Monday for a checkup and Ruth on Tuesday for chemo. Albert & I stressed to each of them that we want to treat whatever has been causing this pain that I've been having for more than a month, and not just keep taking the pain meds forever. The surgeon suggested that there may be an infection in the clavicle, and Ruth wanted to rule out a tumor, so she sent me for a CT scan on Tuesday. Good news is a) no tumor and b) no bone infection. Either of those would have meant 6 weeks of treatment, either daily radiation or daily IV antibiotics. Ruth and the radiologist are pretty sure that there is an infection in the soft tissue around the clavicle, and she is working with the infectious diseases folks to figure out whether to take a culture (which they do under CT guidance, argghh, more procedures) to determine what the infection is or treat "empirically", and just throw antibiotics at it. Will know more today. Other good news is that the first Gemzar/Carboplatin treatment brought the liver numbers back down to about 1000, from 4000. Good sign.

Catching up

Not too much to report this week... we had painters in all week and all they accomplished was the kitchen & bathroom. There was a lot of plastering needed. It really disrupted our day-to-day lives so we are not sure when we want to schedule the rest of the apartment. We also had intended to get the invitations to the bat mitzvah out already but now it looks like Monday. Arghh. I had lunch on Monday with my "lunch club" from work. It was great to see the crew again, and I can't wait to be able to do this regularly.
On the health front, Albert had a clean PET CT, for which we are grateful. The wound is starting to show signs of closure, and the pain has been pretty manageable. I have to say, though, that my ability to get around and do things is still very much diminished. I'm going to ask Ruth to refer me to another doctor who can address the underlying condition-- maybe a neurologist -- so that I can find out if there's something I can do besides pain control. Maybe there are exercises or massages that will help the inflammation heal faster.

Doing better

I think we may have finally gotten the pain under control (hope I didn't jinx it!) and I've been resting a lot more to try to let the wound heal up. My friends at work threw me a big party on Thursday, there must have been at least 75 people there, and it felt good to be able to say my goodbyes like that. I am a very lucky person to have worked with so many really good people with such big hearts. Haven't left the house much since then.... matter of fact, I think today might have been my first day out. I have to be careful because it's very easy to overdo things and get this pain in my shoulder/chest started up again.

The stitch is back

I probably mentioned at some time that I had a "stitch" in my side off and on for a few months before my cancer diagnosis, that turned out to be the liver tumors. Well, over the last 3 days, it's back. Ruth palpated it yesterday, and yes, my liver is enlarged again. So that's depressing, on top of all the other depressing stuff over the past week. I want to feel like we're moving in the right direction, we started gemzar/carboplatin yesterday directly into the vein in my inner elbow and that went fine. They were worried because gemzar burns some people going in. I didn't experience that. Sick this morning from it, though. I didn't want any heavy duty nausea premeds because I have been having trouble with the pain meds causing constipation and the nausea meds do the same thing - shut down peristalsis. May change my mind for next time if I am doing better in that regard. We also upped the fentanyl patch to 150 mc and will watch for 48 hours; if that doesn't do it, I have a script for 2x100 that I can fill, plus fentanyl lollipops for breakthrough pain. (Ruth told Albert to give me a lollypop if I'm crying, I felt like a four year old!) I have tried to wean myself of the percocet which doesn't control the pain as much as just knock me out and keep me from "regularity".
Also saw Dr. Vine who likes how the canyon in my chest is closing up. I still have to debride it 2-3x a day with the peroxide, and I'll see him in another 2 weeks. We will probably look to install a new port around that time.
Down about 45 pounds so far, luckily I had lots of extra.

not up to posting

will check in later in the week.

Results

We went to see Ruth today and the news was mixed. There has been tumor growth since the scans at the end of May, although they still are smaller than from the first scans. On the other hand, no progression to other organs. The liver enzyme numbers came up a little too (wrong direction). We can't know whether the chemo break for a month was responsible or whether the abraxane had maxed out its effectivenes... in either case, it's time for a switch. So next week I move to a combination of gemzar and carboplatin, which we will do every other week. The side effects are expected to be pretty similar to what I have been experiencing, with the addition of significant fatigue. Glad that I won't have to try and balance work with all of this. We'll add the zometa back in next week too, and the avastin once the hole in my chest closes and/or I get a new port in and healed.
We also worked on changing my pain meds for the inflammation to the nerves in my chest. We've upped the fentanyl, and switched to the brand name (bye by $600) version, and added neurontin which may help with quieting down the nerves. I was literally sweating like a faucet yesterday from all the meds; it was making people uncomfortable looking at me, I think. Have only slept through the night once in the last 10 days or so, and I have hopes for this new patch, which I'll get tomorrow.
I'm in a support group for metastatic breast cancer patients at NYU (only about 6 members), but I missed a couple of sessions and I found out on Wednesday that one of us died in the interim. She was really young, under 40, and it threw me; I knew she was very sick but she was pushing herself to get to the group... I guess I just don't know where the line is between very sick and dying. We had a really meaningful discussion about figuring out what we might want at the end -- hospice? fight til the last drop? but we all know that the decisions that get made in the end are different from what you think when you are "relatively" healthy. In a way, having the group meet before I met with Ruth was a little helpful, I had already started to contemplate what if I wasn't getting better yet.
Albert was on NYU's Sirius Radio Oncology show on Wednesday with others from his support group. Not sure if this will recur, but will post the details if it becomes something he does regularly.

Another late night posting

Things are going a little better, the pain is more under control with the patch, but I do wake with it in the middle of the night. I'm waiting for my 2AM percocet to kick in now....
Uneventful weekend. Went to shul on Friday nite, then Albert & I stayed close to home (ok, I barely left the house) Saturday & Sunday. Alix was at a sleep over last night and is looking forward to last minute school clothes shopping tomorrow. We have a week full of doctors this week -- we both see our oncs and gets scans, and I will also see the surgeon to get his thoughts on how I am healing. I think the wound is getting better (what do I know, though) but the nerve pain is still bad enough to keep me from sleeping through the night. I cannot wait for the day when I can sleep on my side again!! Either side!