Getting my mesh mask

I had my radiation set up appointment this afternoon. That was a very interesting process fitting the mask. First they positioned my head on this little block thing. Then I had to stay very still... no speaking even. I could only say uh-uh and unh-unh. That's hard when you've got your eyes closed and they're running you in and out of the CT machine.

Then when they have you positioned, they pull out this hot piece of "cloth" and pull it over your face. It opens up into mesh as they stretch it so there are lots of air holes to breathe through. Then they tuck in in tight around your eyes and nose and put a cold towel on it so that it hardens up in that position. Then they bolt it to the table and run you in and out of the machine again to see if they have you where they want you. I didn't mind the snug fit and the bolting to the table, but I don't like having my eyes closed so I can't tell what's going on. They did not talk to me much so I was losing track of how long I had been in there and was getting anxious to hear something by the end. Overall it wasn't so bad.

I have my schedule set up with the first "dry run" appointment on Tuesday and then real sessions begin Wednesday morning at 7:45. I decided to go with first thing in the morning and get it out of the way. I may be a little late to court in the mornings occasionally, but once I get there I can get on with a full day. Hopefully that will work better than going in the late afternoon. My last session should be March 4th if things stay on schedule.

I was actually pretty teary most of the day. Darcy left for California on a previously scheduled trip with a friend and it didn't make sense for her to cancel just to hold my hand today. She needs a break, too, probably more than I do, so I'm glad she got to get away. But I started crying when she left and I never really got over it until I went to radiation. It was good to be DOING something about it again. And the folks there are so positive it's contageous. :) It may have helped that I took an Ativan before I went. ;)

So now we have a battle plan and I can start ticking off the treatments. I expect things to get worse before they get better again, but I'll just take it a day at a time.

I'll try to get a picture of the mesh mask and get it posted. It's kind of cool, really.

CT Scan Results: Another Tumor

So that lump on the side of my head that I told them about Christmas Eve... another tumor. It's actually in the sinus bone so what I can see and feel on my temple is just like the tip of the iceberg. They already have a radiation schedule planned out that willl include 20 sessions of the same kind of machine they used last time to shrink the tumor. They will follow that with "cyberknife" surgery to destroy the remainder. I guess it's too big to just do the cyberknife. They have to be very careful to not damage the optic nerve which is very susceptible to radiation. The doc said that I really shouldn't have any side effects from the radiation given where they are hitting. But there will be an increase in swelling. I had noticed my sinuses have been much stuffier than usual the last week or two. So that should get worse and my right ear will seem stuffed up for quite a while.

Sounds like the worst part will be that to keep my head completely still during the treatment they will be fitting me with a tight plastic mesh that will be bolted in place to the table. Freaky! I'm not too claustrophobic but we'll see how that goes. They recommended taking ativan prior to the treatment. And the cyberknife procedure will be an HOUR on the table. Not to mention the 4 weeks of having to take time out in the middle of the day for treatments.

As far as the hip, sounds like that is looking fine. I think the tumor isn't completely gone, but they expected it would take a little while yet for it to completely work. He didn't really pay attention to the spleen tumor but he thought that he had read that it was "stable". In other words, it's not shrinking, but it hasn't gotten bigger either. The nurse said she thought that they may suspend the chemo while they do the radiation treatments... at least if the treatment involved the brain. I'm not sure that they intend to actually radiate my brain... at least not intentionally. The tumor is in the bone again.

Anyway, I don't think my oncologist has seen the films yet. I am scheduled to meet with him on the 4th but I wouldn't be surprised if he moved that up to discuss the scan results and the updated treatment plan.

I am kind of pissed off that it seems like he hasn't treated this as aggressively as he could have. I don't really understand WHY he didn't get complete CT scans done back in November after the recurrence was discovered. If tumors were found in my hip and spleen, it would seem plausible that they would be elsewhere as well... like in my head. And maybe that would be someplace that could be treated with radiation... like we're doing now. And maybe only the cyberknife would have been needed then.

CT scan yesterday

I had my updated CT scan yesterday that included the chest and head this time so we should have a more thorough look at where things are at. The lump on my head seems to have gone down a little bit, but it may just be that I'm getting used to it. They gave me a CD of the films to take to the radiation oncologist, whom I see today, so that that he can take a look to see how the hip tumor is doing. If symptoms are any indication, it should be fine. I am completely symptom free in that leg. I did go for a walk around Seward Park Saturday and had a bit of achiness that night but it was gone the next day. That could just be from the bone still healing I expect. I don't know if he will discuss anything about the head or the spleen tumor with me or if I'll have to wait to hear from the oncologist next week.

I'll keep you all posted...

BTW, I had to take 3 doses of Predisone prior to yesterday's test because of my slight reaction to the comtrast dye last time. It wasn't as bad as the dexamethsone I take for chemo, but I do have the steroid face flush today and feel a little crappy. *sigh* I hate that stuff!

Change in Treatment Plans

I got a call from the oncologist's office today checking on how I was doing after my allergic reaction to the Carbo on Friday. She said that the doctor will likely change the chemo plan depending on the results of the CT scans the 26th. If the current combo was working they will put me in the hospital for 2 days for the next round to desensitize me to the Carbo. Sounds kindof scary, but better than having to quit something that is working. Still up in the air as far as what would be tried if this is not working.

So I meet with him on February 4th to discuss the next step. I wish they hadn't called today. Now I'm gonna be worrying about this until the 4th.

Long Day of Chemo Today

It started with them not having me on the list to get treatment today. Fortunately we had shown up about 30 minutes early so it got straightened out and we actually got started a little early.

Everything went well through the Taxol. I think she was running the infusion rate a little slower than my last nurse did so it seemed like it took longer. We finally got the Carbo going about 3:15. That's a 30 minute infusion so I should have been done at 3:45. Darcy left just before they started to pick up my anti-nausea med from Group Health. About 15 minutes into the infusion I started to feel kind of funny. My right ear felt itchy inside, then my eyes felt a little ichy. I started feeling flushed and then my palms really started itching. I called for the nurse and told her what happened and 6 nurses came in an started me on oxygen, put a bunch more monitors on me and called my oncologist. He ordered the carbo stopped and ordered more benadryl, steroids and ativan. My heart rate got up to 133 beats per minute and my blood pressure went up to 138/110. After the steroids, things dropped back closer to normal for me. Soooo -- I didn't get out of there until almost 5pm.

So I think I'm done with the Carbo. I have no idea what he'll try next, but that's a little scary. I guess sometimes they will put you in the hospital and desensitize you to carbo, then continue with it, so I guess I can't rule that out entirely. She also said I may have a pretty good post chemo week given the lack of the full dose of carbo. Lets hope there is that one silver lining out of this.

Tha worst part was that we had planned having friends over for dinner at 4pm and we had to postpone. :(

Round #3: Pre-chemo doctor visit

I saw my oncologist yesterday for the pre-chemo appointment and got a few questions answered. He told me why he ultimately opted not to take out my spleen. He said that since the most pressing problem was the hip tumor they wanted to get that addressed first and surgery would have made that more difficult. He also said that since I'm doing chemo there is some hope that that will put me into remission on its own and I then would not need surgery at all. Finally, he said that I can always have the surgery.

He also set up a CT scan on January 26th to check the progress of the treatment so far. I guess any earlier would not have given the chemo and radiation a chance to do its work. So that will be good to know. For now, the plan is the usual 6 rounds of treatment, like I did last time. Which means that I will be halfway through after this round. Yay! But I guess that will change if the disease has progressed further instead of shrinking or going into remission.

As far as the lump on my head, it was apparent that he had NOT been told about that concern. That kindof upset me. He did feel around on it and said that it didn't seem to be a related tumor because it was smooth and uniform. He also said that it isn't in the sub-cutaneous layer, but seem to be down in the layer that covers the skull. So he doesn't plan anything for now, but since I'll be in for a CT scan on the 26th, they will include a head scan if the thing is still there [which I suspect it will be since it's been there for a month that I know of]. So this will be a scan from my pelvis to the top of my head. Finally a full picture of what's going on. You can bet I'll be nervous waiting for those results.

Darcy cut my hair again last night because it was looking pretty ragged after some grow out after the cut with that crappy set of clippers. I got a better set of clippers and they did a good job, but the longest comb [used to set the length of the cut] was only 3/8". I would swear it was shorter than that, too. At least when this grows out it will be more uniform. (what I manage to keep on my head, anyway)

Feeling pretty good

I have to say, at the risk of jinxing things, this last chemo round went better than any of the priors, including the 2003-4 set. I never really felt as sick, and had less joint pain than I usually do, I had energy for more days into it and then haven't crashed energy-wise, even after I started feeling better. I was tired Day 6, but not like I used to be and by Thursday, I was feeling pretty good. I worked from 7:30 to 5:00 yesterday and still had energy at the end of the day. I didn't crash into bed at 7:30-8:00 like I did last time around. Amazing. This morning I feel like I could do my old 2.5 mile walk around Seward Park. In fact, I may go for a partial walk around the park today. I miss going there in the mornings.

I wish I could pinpoint what it was that helped but I can think of a combination of factors. I think the L-Glutamine has helped alot. I also drank plenty of water without overdoing it. Radiation was finished, although the fatigue from that should be more pronounced now than it was in December. Putting Icy Hot on my joints did help. Maybe the biggest thing though was having Ativan and Ambien to help with sleep. It worked really well one night and then at least gave me some rest another two nights. Being more rested gave me more energy and allowed me to be more active, which may have helped work the chemo through my system. I was also having alot of hip pain last time and being in pain can sap your energy as well. My hip is doing so well I feel like getting out and walking to test it out. :)

I did finally blister right in the crease of my leg/groin from the radiation. I wasn't expecting that this far after finishing. It hasn't been too bad because there is not alot of rubbing going on there. Once I figured out what was going on, it's been better and seems to be healing.

Overall, I'm feeling more positive about things today.

Update:

My brother was visiting from Spokane this weekend and had shaved his head in solidarity with me. Here's a pic of the two of us with nearly matching heads.