cyberknife lives?

Andy and I went to meet with my radiation oncologist this afternoon to get her opinion on my scan results. It couldn’t have been more different than the medical oncs. As far as she is concerned not only is it way to soon to make pronouncements about whether the treatment has succeeded or failed, she also feels that we can’t really tell right now whether there has been disease progression or not. It’s complicated (of course) by both the radiation treatments (past and most recent, both short term and long term side effects), and my particular tumor which when read in a ct-scan kind of melds in with the muscle tissue making it imperative that each person is measuring the exact same thing. Apparently what the med oncs were assuming was growth, had to do with the radiologist measuring the part of the tumor pressing into the spine, not the growth of the whole tumor itself. I won’t get into all the physical details, but she showed us everything on the actual scan(s) and explained it all to our satisfaction.

Bottom line, she feels that we are progressing just fine and that the increase in symptoms has explanations in my particular case. All the things Andy and I mentioned to the med oncs on Wed. were right (about how long the rad takes to work, the high dose of the rad, the effects from previous rad, etc,). That’s because we’d been listening to the rad onc explain all this stuff to us this fall, we had a crash course on cyberknife that they didn’t get.

So the plan for now is to continue with the steroids and weaning off of them, continue with pain management, and get another scan in 8 weeks. This time we’ll do a PET and can compare to the Sept. PET (this last test was a CT that was compared to the August CT). I know it’s frustrating but as I have mentioned before, scans are not these magic tests, so much is up to interpretation, each test has their strengths and weaknesses, etc. No absolutes, especially in my topsy turvy cancer journey.

So, more patience and NO CHEMO for now, yeah!! I am so sorry to have upset everyone with my previous news. I know it’s not my fault, but I still hate that anyone was upset by it. I am so happy though with the outpouring of love and support I have gotten from you all. It means an enormous amount to me and has helped keep me calm and centered throughout this craziness.

And I got a good haircut out of the deal 🙂

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another day

So I woke up feeling better today, thinking that for now we have no idea what lays ahead so again I am choosing to keep my mind on the positive scenario. Makes it a whole lot easier to enjoy my day.

I spent the afternoon at the grocery store walking the aisles, reading nutrition labels, gathering up vegetables and some meats (since I can’t get my comfort food from carbs I’m going for meatloaf and some beef stew in addition to the healthier vegetable options. I’m going to make a snap pea soup too). I also bought all kinds of different flavored waters and sparkling waters to see if that will make drinking easier. I didn’t time myself very well though and before I knew it I was on a long slow line at the checkout with an overflowing cart and needing to get Z. from the bus stop real soon. I just plodded along and made it home and tried to get all the cold foods into the fridge and freezer in the basement. Her bus has been coming early this week and did so again, so before I finished the doorbell had rung and there she was again (I’ve missed picking her up the last time too). It’s just a couple blocks walk but the streets/intersections are crazy so we hadn’t gotten to her walking home on her own yet, unless I wasn’t there. I think it was actually good for her, that bit of independence and me not making a big deal about it.

So early this evening Z. and I had appts. for haircuts, just a bang trim for her but a full-fledged haircut for me. I can’t even remember when I had a haircut last, it’s been a long time and my hair was very long, very flat (winter head, I have curly/wavy hair) and looked awful. A. encouraged me to keep the appt. and get the haircut anyway, even if I end up losing it soon. I am glad I did! It’s above my shoulder and looks much, much better and my face looks much less drawn. The rapid weight loss of the last couple weeks (16 pounds I think, since starting the steroids again) doesn’t have me looking my best. In fact when Z. saw me when she got home from the bus stop I was running around with just a long sleeve shirt (instead of the usual hoodie and layering) and she saw what I really look like for the first time and told me I looked really different.

After the haircuts we walked next door to the farmer’s market. I wanted some leeks and to look at the prepared foods for a side dish for dinner (we were all having different leftover proteins from previous dinners tonight) and found some yummy looking ratatouille. It was really good although I am paying for it now, my stomach is really queasy in spite of the zofran. Z. also wanted a special dessert and picked out an apple pastry which she devoured after her dinner.

Tomorrow A. and I are going to meet with the rad onc in the afternoon. As I suspected, in talking to her nurse, she wasn’t aware of what was going on yet. So we’ll get some face to face time and her opinion on what is going on with all of this. I think if it hadn’t been the holiday it might not have played out like this, but it’s a bit annoying that the med oncs took over (although at the request of pain management) so quickly. Anyway, it’s just one of the things with a cancer team, regardless of how well they coordinate (and I do think they do that well at my hospital) it still comes down to the patient to be the one to make sure it all happens. That’s fine with me, I’d rather have some control in all of this.

Z. is supposed to spend the weekend with her grandparents, weather permitting (I’ve not actually looked at forecasts but have heard from others that snow is coming). It will be good timing to have a couple days to ourselves to talk freely, especially after seeing the rad onc.

So, life goes on.

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scan news

I saw the med onc late this afternoon and found out that the cancer is progressing. He considers the cyberknife radiation a failure and is as he puts it “deeply disappointed” as they all felt really strongly that this was going to work for me. I still have to talk to the rad onc for her opinion on this. He says that while the tumor is not spreading, it is affecting my quality of life. Kind of that between a rock and a hard place line. The pain of the cancer on nerves and the erosion of the spine is intolerable. The pain meds themselves are not enough to keep it in line. The steroids are keeping it at bay (still feel it, still have tingling in my leg, doesn’t stop the tumor from growing) but my blood sugars are way too high because of it (and may continue to be that way even without them as I think my metabolism is totally wacked right now, but whatever, I’m still in the thick of it all and even if I stopped the steroids tomorrow it wouldn’t magically change my blood sugar problems for a while).

Anyway at this point the med onc says the only solution to the pain is to get rid of the cancer and the only things left to me are chemical. He gave me the choice of chemotherapy (taxol/carboplatin) which I have had before and they consider me to have responded “well” to. The other option is a phase 2 clinical trial of something called Zalapsis. Not much information to go on, but the bottom line is if I chose the Taxol/Carboplatin now, I can’t do this clinical trial later. If chose the clinical trial now, I can stop at any time and do the chemo. We talked about things like Avastin but he really doesn’t feel my tumor would respond to it (certainly not as a first line of treatment at this point) because of the way it has been acting.

Ugh, I’m not going to go on about the medical or science part of it right now, I would just like to hold a whine fest instead. He’s deeply disappointed? I can’t believe with all that radiation they gave me that it didn’t hold the damn thing back, not even a few months (never mind the year or years I was really hoping for). Damn! I have always known that I would reach this point, but not now. It’s all so complicated by the pain and the steroids and the diabetes crap that I can’t even have a pity party and wallow in a piece of cheesecake right now. I feel so yucky from the steroids that I can’t drink a glass of water or other liquid without it tasting weird. Everything I put in my mouth (which I have to do because I have to take pain meds without throwing up, and have nausea, digestion and heartburn issues with the steroids and the blood sugar meds) is an issue. Maybe it wouldn’t be so bad if food wasn’t so important to me. Besides loving food, I am also emotionally dependent on food. I tend to get pissy whenever I have to restrict it. Chemo won’t make that any better, first I’ll still be on steroids (even if I get off them for the pain, I need them for the chemo) and then there’s that whole pesky nausea and vomiting thing it does anyway. So I’m going to have to figure out how to cope with all this and fast because this is my reality.

Stupid to be whining about food? Well, it’s easier than whining about the important stuff, life, death, the affect on Z. and A.’s lives, etc. I’m just pissed and frustrated right now and yeah, I’ll get over it and go on, but not today.

I’ll keep posting as we make decisions.

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still in limboland

Not a lot has changed since my last post, still don’t have anymore info on my scan but assume that I will find out something on my Wed. late afternoon appt. with the med onc. Meanwhile I am down to two steroid pills a day and hopefully the effects of the extra steroids (for the iv contrast allergy) are dissipating by now. I am still taking the same blood sugar med as last week (although the dose was upped) and if my kidney function lab tests I had today are normal tomorrow I will start a 2nd blood sugar med. Hopefully we can get these numbers much lower. Right now my biggest frustration is with eating, I am trying to keep my carbs very low, which is dull and depressing, because the numbers are so high, but I honestly don’t know that my diet is having a big effect on my blood sugars right now or not. It seems my body and it’s response to cancer and inflammation has taken over when it comes to my metabolism. Speaking of which, I have lost 13 pound in a week since starting the steroids. I am down to my lowest weight after taking the first round of steroids post cyberknife treatment.

It’s a kind of day by day thing right now, talking to various drs. and adding and tweaking meds. I am managing my pain okay right now, not pain-free by any means, but what I would call completely tolerable given the situation. I am entering the “other worldliness” state from the steroids I hate so much, but not much I can do but try to cope with it.

Z.’s back in school today and A.’s back to work. Having a few hours to myself in the house has been good, I’ve gotten to work on some things, like the extremely late holiday letter we normally send out before Xmas. Hopefully tonight we can print it, stuff it, label it and post it and be done with it!

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Happy New Year and little news

Long, long night and day today so far! I was up half the night, probably got about 2 1/2 hours sleep total all night. Good thing about steroids is I was able to function at least this am with out the sleep. Woke up to snow and ice, so fun! We were so tired and had my long list of things to do and take and screwed up and didn’t bring the prescription with us. We get there at 7am and find out that I needed it. I thought because the med onc had re-ordered the test that I didn’t need the original rad onc script and unfortunately the person who called me yesterday did not remind me to bring it so it wasn’t in my mind until a few blocks from the house. I mentioned it to A. but he misunderstood what I was saying and I was getting pooh-poohing from both A. and Z. about chilling out that I just grumbled and let it go. Not a good idea.

So no drs. are available that early, and between the weather conditions (roads were being closed, people were sliding into the hospital roads) and the holiday nothing was happening. A. was getting pissy with the receptionists, I was getting pissy with him, Z. was getting mad at me for being pissy with A. and so on. I took Z. to the ladies room after a bit and explained to her that we were just frustrated and not dad and I were not mad at each other. It’s just something we do but we are really fine (and that is honestly true).

So A. tells them he wants to drive back home and fax the script to them and they think it’s a horrible idea for him to go back out in the weather and talk him out of it. Finally after another half hour he says to hell with it, he’s going back home. Meanwhile they had put in a call to the rad onc but no one is even at the rad facility (way out in an area that was worse hit by the weather). Tells me to call him if they get a call from her while he’s gone, which doesn’t happen. Took him about 50 minutes but he got home, and then it took him another 10 or 15 minutes to figure out how to fax it, but he does. So I have my scan around 9am or so and then Z. and I go down to this little snack shop and eat something (I was fasting and needed to eat and take a pile of piles, including pain pills which I needed desperately at this point since my last dose had been at 2:30am when I got up after an hours sleep and ate a little and took the meds- if I don’t eat when I take them I throw up for sure). A. arrives around 9:30 or so and we got home safely. The roads in the suburbs were salted so clear, but the minute we got over the city line we were on unsalted and icy roads. Thankfully my mom’s Lexus suv got us through, that and going very slowly.

So poor Z. had been planning this big get together with a friend this morning and this was the only time the whole vacation they could get together. She’s been working on a mystery story and printing out cards and having me help her with cutting things on the paper cutter and scanning and printing out drawings she’s made. It was a big deal to her and I really wanted her to be able to do it. So thankfully her friend’s parents were not put off by the weather and after we got home they brought her over here. They picked her up mid afternoon to go off to the mountains for the rest of the winter break. I didn’t even see her friend (although I heard them) as I had gone home and changed and went to bed. I played computer games (didn’t work too well as they were timed and I kept dozing off) until I finally put it down and went to sleep. I got up mid afternoon and ate and took more pain meds.

Shortly after that the doorbell rang, it was Z.’s friends mom and I barely got to say hi when the phone rang and it was the pain management nurse from the hospital. As I suspected they weren’t able to get a definitive answer to the scan because there was no on around to do the comparison. However they did know that there are no new areas of growth. They just don’t know if there has been actual growth, but there is definitely something pressing into the nerve area. Because the symptoms suggest inflammation and because it is basically responding to the steroids, she thought that those were signs of it being inflammation. So I have to wait until next week to see my med onc for the actual diagnosis. One thing that kept me up the rest of the night last night was thinking about the ca-125 (blood test- tumor marker) that I had done on Tuesday. This is a bit of a controversial test and because it was done at a different lab (the hospital, previously I had it done at the internist’s and it was sent to a different lab) the comparison may or may not be valid. I felt that the information could potentially freak me out if it was higher, but without the confirmation of the scan results wouldn’t necessarily be full and accurate information. So at 5:30am I am talking it out with A. about not going to get the blood results (or asking about them on the phone) as to not make myself completely insane. I am usually all about wanting information, but I realized in this case it would do more harm than good.

So for now we are going to go under the assumption that this is being caused by the inflammation from radiation until we are told otherwise. We have talked openly with Z. about this and she seems to be on board with this idea too. I am being called to our dinner by A. right now so will come back and finish this post up tomorrow. Happy New Year~

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