Archive for July, 2010

proton beam

Proton beam is not going to be an option for me, regardless of whether or not the panel accepts me. The dr. told me that because I would be radiating the area (this is the lower back) for a third time the likely effects would be kidney failure, and my spine would probably break apart and I would be paralyzed. And he asked if I would be okay with that. Uh, no? Weird appt., he was very upfront which was great, but the way he presented it all kind of just took us both aback. I barely had anything to say as I was just kind of shocked I guess with the matter of factness in the way he said it all.

So he agreed that cyberknife was good for the skull issues and didn’t feel that proton beam offered anything better. So that’s good in that we have everything proceeding along for that.

Got a call from one of my favorite nurses at pain management today. My dr. is on vacation but she said they had been thinking of me and she wanted to know how it was all going. It was nice having her check in, it’s not like it was protocol or anything, just something she wanted to do.

I went to my internist’s office this afternoon (my dr. didn’t have hours this afternoon so I saw one of the other drs. and I did like her very much). She confirmed that I very likely do have thrush in my mouth so gave me the Nystatin swish and swallow yuck. There are dissolving lozenges I could have used but with the half numb mouth they would have driven me nuts so as icky as this stuff tastes I will try this first. It’s 4 times a day for 10 days (or until it goes away if it is longer). My blood sugars are a mess so she added another pill to the regimen. They were doing well till the increase in steroids, which at my current dose really wacks them out. I’m hoping to push off insulin for a while longer, not sure if I’ll be able to lower the steroid dose soon after the cyberknife or not, so I’ll try this first.

I went mainly because I’ve been having urinating/pelvic pain the last few days. I’ve never had a bladder or urinary infection before so wasn’t sure if I did now and I don’t have one now. We’re thinking maybe it’s gas related. With all the increases in both the narcotics and steroids it’s more constipating. It’s not that I am constipated either, it’s just that things hurt more to move along. So I decided earlier today to add a stool softener and already I feel a lot better, so hopefully that will help things along.

I am feeling a sense of relief tonight in that we are doing the right thing with the skull radiation and while it would be great if I could have had proton beam on my spine for pain relief I am surely not going to hurt myself like that in the process to get pain relief. I’m still glad I went though, the whole proton beam thing is so elusive since there are so few centers running right now. And an aside I got to see my friend’s Fritz Dietel’s sculpture- -in person (this is in HUP’s brand new Perlmann Center which is a new building that is just for cancer patients and has a lot of artwork in the various spaces. His is right out in the main floor for everyone to see (some pieces you only get to see if you go down that hallway to an exam room for instance.

So we go on. I’m looking forward to a few days off from drs. Hopefully we can get some work done on my dressing room this weekend and do some enjoyable things out of the house. I’ve gotten a little better at the pacing of my activities I think the last couple days so I feel a bit better. I’ve been able to do laundry today for instance, and while it’s quite slow going up and down the stairs it’s not so painful. I ordered myself some medical supplies, a stool for the shower and some suction cup foot rests for the shower walls also. Also a super lightweight portable wheelchair for the bad days and to bring on our vacation. I think it will make our traveling a lot easier, I can’t imagine doing all that walking in the airport unless things change drastically by then. In the meantime we can use it for shopping and other things around here too. Since it’s not about stability a cane isn’t really all that helpful, but I did also order a couple of the type that have a base and 4 small feet (in a pretty blue color, not the ugly metal institutional ones) to use around the house where I might need help lifting myself up. And a thing you put over your regular toilet seat that both raises it and has little handles to push up on, for the low toilet on the first floor. Eventually we’ll replace it with a higher one as I’ve been wanting to anyway (we have a higher one in our master and I like it being the shorty that I am). I am not embarrassed by using these things, I just want to function as best as I can. I did discover today that it’s much easier when I get out of the car in the driveway to walk the drive down to the street and come up the front walk with its quite shallow steps than to walk up the rail-less front steps that are also quite high. The actual steps into the house are high also but I’ve got some areas to grab (not to mention A.’s arm).

So tonight I want to get comfy in bed with A. and watch something. Maybe more Extras, we have the series dvds (only 2 seasons and a special finale dvd) and have watched about 4 or so and they are really funny. Humor and a comfy bed sounds loverly right now!


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So, quick update for anyone who doesn’t get my direct emails. The cancer has begun to spread and an mri of the brain has confirmed that there is a bone met at the base of my skull in the sinus cavity. It has caused numbness on the left side of my face (pretty much the whole face except the lower jaw, but includes everything else including my eye, my mouth, nose, lips, tongue etc. It’s very annoying, makes eating hard, swallowing my pain pills often has me finding the tiny things in my mouth, food also and the dr. I saw today says I seem to be starting a case of thrush in my mouth now too. Anyway, it was causing pain also, sinus type pain mainly around the eye, but the higher dosage of steroids, which I started a couple of weeks ago has calmed most of the pain in my face and has possibly been the reason that the numbness has arrested at this point. Meanwhile an mri of my spine has at least one dr. and the radiologist feeling that is has now moved either into my spine (in the L3 area, which is next to the L2 area where the original tumor has come back to life, IOW at this time the cyberknife is now considered a failure as the tumor, which has shrunk back for a few months, has now “asserted itself” to not only be the original size, but likely a bit bigger.

So, first things first. I need radiation to stop the progression of the skull based tumor. I went to see my rad onc who did the cyberknife today for her opinion. It’s apparently pretty standard treatment to use cyberknife for this type of tumor, which is also a pretty fairly common spot for “cancer” (in general) to come back. I started the ct setup today, which included getting the mesh mask for my face (no head drilling thank god, but just a form that will sit over my head for the hour to hour and a half the treatments, probably 3 to 5 total). While we are still going to see the dr. at HUP for his opinion on proton beam therapy, even if it is an option some of the decision is timing. I need to do this as soon as possible. The longer it is there, it grows of course and the risks are higher for more damage (today my rad onc was talking about optic damage, ack!, but it should be a problem if we keep moving on this). So of course it being summertime my dr. is going on vacation tomorrow. But by getting started today she thinks we can get all the planning done this week and next while she is away and then when she comes back she can do the final approval and I can start that week she comes back. I would like it to start faster but its about what it would take even without her going away so it’s good.

So unless the proton beam is a yes first, and then can be done in a similar quick fashion it’ll likely be cyberknife. But the rad onc wants us to talk to the proton dr. (who she said is a highly experienced rad onc specialist and will be able to give us some good comparison info too) about the possibility of using proton beam for the new spine met. It’s really too close to the cyberknife field for anymore of the other types of rad, but just maybe it could work with proton. She really has no idea, but figures it’s worth an opinion. We also need to keep moving on the clinical trials contacts, maybe that could help.

The big confirmation of news today is that the treatment for my skull met is not likely to give me relief from the numbness. It could, but it’s one of those nerve things and the longer the tumor sits there the less likely the nerves will come back. The other big thing is that we have most definitely turned a corner. The cancer is asserting itself in a way it hasn’t before by spreading. Because of the specifics of my stupid tumor even when it wasn’t spreading it has been in a spot that causes so much pain and side effects. Now that is even worse with the new spreads. So our treatment choices are not only limited, but not effective. So we continue our search, but I will admit to being less optimistic that we’ll find something. I hope we can, but I think the likelihood of pain relief is low. I’m hoping we can at least cut the edge off of it, because I am reaching some limitations in terms of how much more pain meds I can use. I have been able to cut back one of my oral pain meds (the ones for breakthrough pain that I take every 4 or 5 hours) to 3 from 4 so that is encouraging. I think the stress of all this plus the laying on the mri beds (and having the actual rad treatments will be even worse than that) has poked it into such a state. But once that is all over maybe it will subside some.

Anyway, I will admit that right now I’m mainly just frustrated about my face. Not only is sooooooooooooooooo fricking annoying, I just can’t begin to say how much I do not want to get used to this for the rest of my life, it’s constant, it’s an absolute constant awareness of it. At least with the back pain I get some relief for at least a part of the day every day most days. This never, ever lessens, never mind going away, it’s just a constant state, all the time the same.

Okay, enough of that, some good stuff today is that I bought Z. a guitar (and various accessories) yesterday online and the guitar came today (the accessories should all come tomorrow when the guitar was also supposed to come but it came early). She plays the piano seriously, at a very good music school during the school year, will be doing this through high school with no negotiation. But the guitar is for fun! She wants to learn to play it but it’s completely low-key. She’ll get a few lessons here and there as we can fit them, and will be getting a book/cd course too, but it’s totally up to her how seriously she wants to get into it or not. I just want her to have fun and control over it. So I guess right now anyway I’m as excited about it as she is!

Okay, tomorrow is not a dr. appt. for me, but a well visit for Z. Then Thursday is the proton beam dr. for me. After that maybe a break for a week before starting up the rad hopefully the next week. Now I can start focusing on the Hawaii planning I think, I can at least try to focus my attention to research which I honestly couldn’t manage these last few weeks. I think we’ll be dealing with a portable wheelchair. In fact I was talking to A. about some adaptations we need to make for the house because of the heaviness in my legs which is making getting up off the toilet hard and going up stairs (I can do it with a railing, but we have some stair areas without them). Even with them though it is hard, especially if I am tired or in extra pain. So some new railings, a new higher toilet for the first floor, the portable wheelchair for our vacation, etc. are other things I need to research and get done. I’m fine with it, I just want to function as normally as possible so if these things help I will do them willingly.

Time to head up to bed!

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