Happy New Year!!!

Hope everyone had a merry Christmas, happy Hanukah or is enjoying Kwanzaa. Sorry for not posting in more than a week. I was not feeling well during that time and I stayed off the computer for the most part. I am happy to report that my stomach is feeling much better, and I have a new medication to try following my next Doxil treatment. Hopefully that one will work without giving me a rash or other side effects.

Our friend Ward sent me this link today: http://www.youtube.com/watch?v=TWiXy55OHyY I enjoyed this humorous summary of the year's news and hope you will, too.

As we close out 2008 and look forward to 2009, I hope you remember more positive moments than negative. Although my health status has deteriorated with the discovery of the multiple bone metastases, I lost the hair on top of my head, Dr. K switched me to a more toxic chemotherapy agent and added Zometa, and following the radiation therapy the medical bills have grown by leaps and bounds, there is much to be thankful for this year. We spent time with many of our "far away" friends (Skip and Kathy, Chris and Ian, Anne and Andy, Ward and Melinda, Steve and Kate) and, of course, with our local friends. We visited several new places -- Paris, Venice, and Kerrville, Texas -- and several old favorites -- Las Vegas, Barcelona, Florence, and Rome. We sailed on two of our favorite ships, Brilliance and Liberty of the Seas, enjoyed our pool, ate delicious food and drank delicious wines all over the world, managed to pay all our bills, and bought a new car before the credit market dried up. My mom is still in relatively good health. I continue plugging away at my job and Ed is successfully doing his thing. We are looking forward to some trips in 2009 (perhaps we will end up in your neighborhood!) starting with our cruise on Solstice in March.

I wish all good things for you next year: happiness, the love of family and friends, good (or improved) health, and prosperity. And I'm sending you all a huge hug.

A little better

It turns out that I had a generic form of one of the antiemetic meds in our closet. I've gone from a person who only took Advil when my leg hurt following surgery to someone with so many prescription bottles in her closet that she doesn't know what she has. Anyway, I took a pill last night and again this morning, and I'm feeling a little better. I hope to get in two more pills today and then stop, since you cannot drink alcohol with this medication. I want it out of my system by tomorrow evening so I can enjoy the party. On the other hand, Ed is usually the designated driver, so maybe this year I should take a pass and let him have a drink. Does that count as a Christmas gift???

Despite my lack of holiday cheeriness, I know how blessed I am. If not for Ed, I don't know what I would do or how I would manage. Over the weekend, he insisted on rubbing moisturizer on my bald spot because it looked dry. That might not sound like much, but for a woman who is mortified by her hair loss, that was just the sweetest gesture. Like Ed, so many of you touch me with your love, support, encouragement and advice, and I hope that I let you know often enough and sincerely enough how much you mean to me and how much I love you. You are all why I keep plugging along -- well, that and my hope to get back to Paris next year.

If you are still shopping, wrapping, baking, decorating, or traveling, be careful, enjoy yourself, and try not to get too overwhelmed. Take a few minutes to count your blessings and enjoy the true warmth of the season.

Trying to be positive

I'm not feeling any better today and seriously contemplated staying home. However, I'm working from home on Wednesday and am off on Thursday, so I decided to bite the bullet and come in. My stomach is still bothering me and now I'm really kicking myself for not taking the Aloxi or filling the anti-nausea meds the doctor prescribed on Thursday. I hope to be feeling better soon, as we have an annual Christmas Eve party to attend and I would like to be able to partake of all the goodies that our friend Sue makes. And what's a party without a glass of wine? My stomach can't even handle that the past few nights. Right now I'm struggling with a turkey sandwich, but I'm not getting very far. Maybe I'll try some applesauce.

I have to admit that this is not the happy holiday season that I usually enjoy. Between feeling so sick to my stomach, looking at my bald spots, having to wear a hat around the house most days lately because my head is cold, and thinking back to everything that's occurred this year (the port surgery, two types of chemo, radiation), I just feel a lack of my usual joy and positive spirit. I'm sure it's to be expected and I can't possibly be "rah rah" all the time, but it's put a damper on the Christmas season for me thus far. No, I'm not depressed, just not cheery, and this is the time of year when it's appropriate to be cheery. Once the nausea passes, I'm sure I'll feel better about life in general, but today I'm just blah. Forgive me, please...

We didn't get any snow to speak of in the most recent storm. It seems that each time a snowstorm approaches, the temperatures rise in our part of the state and all we get is rain. Okay, maybe a little sleet and/or freezing rain, but mainly rain. Today it's blustery and cold, cold, cold. It was 14 degrees when I arrived in the city this morning, and as of12:30 p.m., it's a balmy 18 degrees outside. Tomorrow the high is supposed to be in the mid-30s, and it's supposed to be rainy and 55 on Wednesday. Is this weird weather or what?

I hope to report back before Thursday that I'm feeling much better. Keep your fingers crossed.

A brief update

I had my Doxil treatment on Thursday and the doctor and I agreed to no Aloxi and made certain that the Benadryl infusion was only 25 mg, not the 50 he prescribed last time. I took the treatment well and felt fine the rest of the day and evening. Friday I took myself in for Zometa depsite the fact that I drove through sleet, snow, freezing rain and, finally, rain. I felt fine again but took a Zantac for my stomach since I'm still suffering a bit from those 12 days of steriods while I was having the radiation.

Saturday I felt full of energy so I finished decorating the tree, made the bed, baked another batch of cookies, washed my wig, made a few overdue phone calls, caught up on our bills, and placed my final holiday online gift order. Unfortunately, beginning around lunchtime, my stomach really started to bother me. I took another Zantac then finally an Ativan to try to stave off the nausea. Today, I woke up tired despite having had a great night's sleep. So far today, I've had breakfast and a snack and watched some tv. Quite a difference from the past few days.

So, I think in the future I will take the Aloxi to prevent this nausea, even though I prefer to undermedicate and tough it out if necessary. This just seems like a waste of my time and I can't think of a good reason to feel miserable. I'm going to do some gift wrapping since I'm now running out of time, and then I'm going back to my chair in front of the tv. I apologize to those who have sent me notes (and photos) over the past few days, but I promise to respond tomorrow. Today I need to get done what I need to and then huddle under the covers.

Thanks for your understanding and patience!

10 shopping days until Christmas!

The weekend with Mom went well, though the visit was short and the days were busy. Ed helped out with the pre-arrival housecleaning, so I only had a few other things I wanted to get cleaned up before Mom arrived. During her visit, I baked two batches of cookies and began decorating the tree, plus made dinner Saturday night and breakfast Sunday morning. Each day I was pooped by 4 p.m., so I guess I still need to work on my stamina. She is coming back the first weekend in January to celebrate Christmas since I need to work December 26, the 31st and January 2.

My hair continues to fall out, albeit at a much slower rate. Mom was less shocked by my appearance than I expected, so I must have done a better job at preparing her in advance than I thought. Other than having sinus dripping problems (resulting in the cough) and getting tired in the late afternoon, I'm feeling pretty good. I restart Doxil treatments on Thursday the 18th and have the Zometa infusion on the 19th. That will begin the every four week routine until Dr. K decides to change it again. As I previously wrote, I'll have one more treatment in mid-January before having my scans again. At that time, I will also have a brain MRI prior to having a follow-up visit with Dr. Yamada, my radiation oncologist.

I hope you all had a lovely weekend, whatever you did and whomever you spent it with. Happy 30th anniversary to Melinda and Ward! Hope the rain in Carmel isn't dampening your visit.

No waterworks yet

I guess the main issue with the bald spots is that they are a visible sign of my disease. Other than the scar on my left leg, which I rarely look at, there has been no other sign that I have cancer. That goes a long way in helping me believe that I'm not really "sick," despite having to go for treatments, scans, doctor visits and the like. Seeing bald patches on my head, on the other hand, not only makes the disease real, but it also makes it impossible to deny that I have tumors in my head. That is a scary reality, especially when I know that they didn't treat them all -- just the "important" one in my clivus and the one that was bothering me (along with a small one located nearby).

How does one wrap her mind around the idea of having tumors in her head? It's not easy. I suppose I view my disease as being part and parcel of my entire body, not as residing in specific areas. I mean, I KNOW I have at least one tumor in my lung and one in my ilium (blasted though it is now) and multiple tumors in my skull (three blasted as well), but I think about treating the cancer as a whole rather than concentrating on the individual tumors. Does that make any sense? I view myself as a normal person who happens to have cancer, which is why the bald spots are a shock since "normal" people don't suddenly get bald spots. Maybe that's also why I just keep "movin' and groovin'," doing whatever I have to do to treat the disease, and then getting back to my life as quickly and normally as possible. I don't consider myself a "cancer patient." I view myself as me with cancer. That's the best way I can explain it.

The metallic taste is gone and the utter exhaustion is gone, too, although the past two days I've been tired at the end of the day. I was able to enjoy a very small glass of wine Friday night and I haven't looked back since. My cough has returned at the same time as Ed's sinus problems, so we're still not sure whether it's caused by allergies or something disease related. Was it a coincidence that I didn't have the cough while I was on the steriod or during the period while I was still having that metallic taste (meaning the steriod wasn't out of my system yet)? I have no idea. No sign of anything on my back where the treatment to my ilium was performed, but I've been putting moisturizer on it daily as directed.

My mom is coming to stay overnight Saturday and we'll be baking pecan shortbreads this weekend. Last weekend's peanut butter cookies were okay, but nothing to write home about. We won't be using that recipe again. I still haven't gotten around to getting anything on the tree, but Mom can keep me company while I work on that. I hope that your holiday decorating is moving along at a faster pace than mine.

It's a crazy time of year, but make sure you take a few minutes each day just to relax and take a few deep breaths. And a glass of whatever you enjoy helps, too!

Hair...or the lack thereof

I officially have bald spots. Ed and Lydia G. both confirmed that I had a thin spot on the back top part of my skull, but today, I saw bald spots on each side of my head near the back. Now, you would think that with all the hair that's appeared in the shower, on the floor, on my pillow, and in the sink (as well as all over the house), I would have been prepared for this. NOT!! I didn't think I would be able to see it unless I held a mirror up to the back of my head and looked, and I hadn't decided if I really wanted to do that or not. I guess that decision is moot at this point.

I almost started to cry when I saw the first one and really had to stop myself from bawling when I saw the second one, but I realized that if I started crying, I'd never get myself together in time to get out the door for the bus, so I sucked it up. I don't know whether I'll be able to assimilate this sight before I break down or if a breakdown is inevitable. I'll be sure to let you know.

In the meantime, I apologize for not being as prompt as usual in getting back to those who have e-mailed me this week. It's been a little crazy at work (believe it or not), but I have read and saved your messages and I will be getting back to you soon. I promise!!

A holiday scene

I received this from a woman we sailed with last November. According to her e-mail, this house was decorated by an electrician who had lost his job...and presumably had lots of time on his hands. It almost looks computer generated, and it's pretty amazing. I can't imagine being his neighbor, though!

It has begun

This morning, small clusters (not big enough to call clumps) of my hair started coming out. As many of you know, I'm a woman with a LOT of hair, so I don't think I'm bald in those spots yet, but I'm now on my way. I have to say it was very disconcerting to run my fingers through my hair and keep pulling it off my scalp. It doesn't hurt at all, but it was upsetting. I can't imagine what it would feel like to lose all of my hair if I was upset about this.

Although I'm not as tired as I was, I'm starting to feel other after-effects. In addition to losing hair, my scalp is getting increasingly sensitive, as is my pelvic bone. My stomach is still bothering me and I'm still getting that metallic taste, although that has diminished somewhat. My skin is peeling, which I assume is a combination of the typical post-vacation post-tan occurrence and radiation-induced dry skin. Although my cough has improved 95%, I have been coughing more over the past three days. Who knows what's causing that. The good news is that the bone weary fatigue is gone and I'm left with simply being tired by the late afternoon. I'm sure that, too, will pass.

Last night I attended a birthday dinner with the woman I mentioned a few weeks ago who was recently diagnosed with breast cancer. Several of the women were suggesting that things (like cancer) happen for a reason, intimating that there is a lesson to be learned from the experience, which one may or may not ever figure out. On the way home, I gave that some thought, as I have done from time to time. Although I don't necessarily agree that things happen for a reason, I do think that unpleasant life experiences can change you in positive ways if you let them. Because of my cancer diagnosis, I've become a stronger, more assertive person. While I believe I have more patience with others most of the time, I have less patience for people who spend their time wishing their lives were different but either do nothing to change their circumstances or refuse to accept what is. (I guess that's not really a positive change.) I have more empathy for the different ways people deal with adversity. I embrace my age and each passing year as an accomplishment rather than a disappointment, and I try to appreciate all of my life's experiences rather than constantly looking forward to the next one. I appreciate my friends more than ever. I understand that the people who care about me are frustrated by their inability to change the course of my disease and so they try to help in some way -- and I try to let them. That's a tough change for an independent person. Now if I could only get someone to clean my house... LOL

As I always do at this time of year, despite its inherent insanity, I think of all of you and wish you peace, love, health, happiness and prosperity. Please take some time out of your busy schedule to reach out to someone and say how important she/he is in your life. That may be the greatest gift we can give each other -- as well as the least expensive.

The restful weekend

I hope everyone enjoyed their Thanksgiving holiday weekend, however you spent it. As I promised myself, I have spent it on my butt and today has been the busiest day of the four-day weekend. We had a good dinner on Thursday, although the metallic taste persists, and we decided on Friday evening that we would try a bland diet for me to see if that might speed the return to "normal." I'm trying my first day without Zantac, but since my stomach is now actually paining me a bit, I might have to take one. I've been sleeping between 10 and 11 hours a night, and I've watched a lot of television. I managed to get my Christmas cards done, and I finally washed and dried the wig. That was an adventure.

For the rest of today, I plan to pick out which cookies I'm going to bake this year, put away the few autumnal decorations I have out, and put the last of my warm weather clothes away. That should pretty much wear me out.

Thanks to Lydia G., who kept me company yesterday. I haven't even felt like talking on the telephone lately, so having a visit was a real treat. She brought goodies and things to do. You're a sweetheart, and I love ya!

It's back to the city tomorrow, so I don't want to overdo it today. Safe travels to anyone heading home after the long weekend, and drive carefully if you're out doing some holiday shopping.

Since I promised to post photos of the hair, here they are. You've already seen the "before" hair from our vacation photos, so no need to post another one here. Keep in mind that I had already had the wig on after my haircut, although even fresh from being washed and dried, it doesn't really look much different. :)

Miserable...but hopeful

I'm not feeling any better today. Still bone weary and wondering what I'm doing here. I probably should have stayed home, but since I'm off for four days, I felt obligated to get my butt into the office today. I'm still not sleeping well enough or long enough, but I hope to resolve those issues starting tomorrow. We have no plans for the entire weekend, so other than eating and watching the Macy's Thanksgiving Day Parade, I'll be sitting around with my feet up.

Hopefully with the end of the steriods tomorrow, my taste and appetite will return to normal, and I'll sleep and feel better quickly. No bald spots or redness in any areas yet, although the skin on my back is tender. I'm still moisturizing away and sporting my wig, so other than my eyes lacking their usual sparkle, I assume I look okay.

I'll be thinking of all of you tomorrow as you gather with family and/or friends. I'm so thankful for each and every one of you. It would be a tougher road to travel without your support, encouragement, friendship and love. I'm glad to be spending another Thanksgiving with you, even if it's only in spirit.

Happy Thanksgiving!

Finished!

Yesterday was a bad day. I was tired (although I feel even more tired today), depressed, anxious, and completely not myself. I actually had to admonish myself during my walk to the hospital not to cry. Very unlike me. When I arrived, Joan, Dr. Yamada's assistant and liaison, stopped by to see me and noticed how tired and depressed I looked. She suggested that the metallic taste is being caused by the steriod and that I should continue to take Zantac for another week (my steriods finish Thursday). If the metallic taste continues beyond that, I should let them know.

She feels the moodiness is also from the steriod, and she and the nurse think that having the treatments along with coming into work every day has worn me down. The nurse tried to convince me to take off today, but it's a short week, so here I am. I don't recall the last time I felt this tired. Maybe about 10 years ago when I came back from Walt Disney World with the flu. I slept well last night, but it just wasn't enough. I did manage to have dinner with Ed and get caught up on what's happening in his world, so that was a good thing. I'm going to try to make it through dinner again tonight. Then it will be only one more morning this week with an alarm clock!

The treatment went fine yesterday and took much less time than they had allotted. Apparently I parked my butt perfectly in my mold so no adjustments were needed and I had seven blasts lasting between 37 and 65 seconds. All were done from the back directly to the tumor, so there was no colon involvement. No diarrhea issues forthcoming, thank goodness. In conformal radiation, where the beam is not targeted, other structures can be involved which may lead to complications like diarrhea. I'm sure I paid a lot more for this targeted approach, but the less they hit, the better.

My treatment was finished in about an hour and then I met with the nurse and Joan again. I have to go back in eight weeks following a brain MRI and my pelvic CT scan (mid-January). I guess they will be able to see what's going on with the mets at that time. As mentioned yesterday, my next Doxil treatment is scheduled for December 18 with another Zometa treatment on the 19th. I'll have to contact Dr. K's office to find out when she wants to scan and see me again. Perhaps I'll be able to get in another Doxil/Zometa treatment and then be scanned. At least I'll be able to get through the holidays without scanxiety.

So, my radiation saga ends. I'm very happy to have it done with and now will await the reactions. No bald spots yet and no redness that I nor Ed can see. My skin is still very dry all over, but moisturizer helps. I'm also still eating my way around the East Coast, but that should taper off with the end of the steriod -- I hope.

The young guy at the front desk of my office building asked me today if I changed my hair color and told me it looks great. Wait until my wig wearing days are over and I reveal the chopped off grey hair! That will be a shock to everyone. I really like the wig, but I have to admit that I enjoyed spending the entire weekend au natural!

Happy Thanksgiving everyone and safe travels to anyone hitting the road or sky in the next few days!

I'm an eating machine

Damn these steriods! All I do is think about food. I eat (despite that metallic taste) and two hours later I'm starving. Watching cooking shows yesterday afternoon didn't help, but even this morning, all I'm thinking about is food. With Thanksgiving just days away and folks talking about their upcoming meals, I'm jonesing now for turkey, stuffing, mashed potatoes, gravy, biscuits, cranberry sauce and pie, pie, pie! Thank goodness I only have three days left of this medication or I would be the size of a small house.

I slept a little better last night but I'm exhausted today nevertheless. Today is "G" day: gut day for all to see. I've gotten to know this group of three techs who have been working with me all week, so I'm not looking forward to showing off the flab this afternoon. The good news is that they won't see me again after today and that they've probably also seen flabbier guts than this one. Still, the humiliation factor is looming again and I'm not happy about it.

Overall, I'm not happy about the entire radiation treatment thing, but I've tried just to bully my way through it without giving it too much thought. The idea that I've been treated with these rays that themselves can cause cancer down the road (should I survive 15 or 20 years) and that the treatments can have such a detrimental effect on my daily strength and stamina is very depressing. Still, I'm trying to get through it and hope that this will provide long-term eradication of these metasteses. With another Zometa treatment under my belt and Doxil coming back up on December 18, I should be back to fighting the known evildoers without further interference from these upstarts. We'll keep our fingers crossed, won't we?

Lunch should be arriving momentarily, so I'll sign off. Thanks for listening, and have a few bites of food in my honor today. I'll enjoy them vicariously...

Yuck

My last skull treatments on Friday went fine and I hit the sack immediately upon getting home. Slept for 12 hours and spent most of yesterday simply laying around except for a brief trip to the library. Unfortunately, that resulted in not sleeping well because my body felt like it had been prone for so long there was no point in snoozing! I caught two hours of sleep at a time, then would be awake for a while, then sleep for another two hours. Made for a long night. Today I'm staying awake and vertical until bedtime since it's back to work tomorrow and time for my last radiation treatment at 1:40.

I've been suffering with a terrible metallic taste in my mouth for the past two days, which is really quite miserable. It doesn't sound like a big deal, but it makes everything (and nothing) taste terrible. Brushing my teeth doesn't help, eating and drinking don't help, it's just plain yucky. I haven't even been drinking any wine -- that's how bad it is!! I will ask tomorrow at MSKCC how long I can expect this to last.

Otherwise, things are quiet. I caught up on paying the bills and organizing some of my paperwork, but I think it's time for a break. I'll be in touch again tomorrow or Tuesday.

Are you getting tired of me yet?

Daily posts! This is a first!

I arrived 10 minutes early for my radiation treatment yesterday thinking they may be on time since it was so early. I waited 15 minutes past my appointment time and then was shown in. Everything was going well through the first half of the treatment and then the attending physician (Dr. Yamada was not available) disappeared before approving my images. Apparently, the techs set up the machine and take an image of the tumor, and then a doctor views that image electronically and approves it or asks for an adjustment in the table. Once it's approved, the treatment begins. Well, I laid there all alone in that room for at least 20 minutes with no one saying anything. Since I was already anxious about making it out of there by 11 so I could catch a noon bus back to New Jersey, I finally reached a slow boil and starting calling out for an update. After several minutes of "hellos," the tech finally came into the room (from I know not where) to update me on the lack of approval.

In the end, it worked out and I was out of there by 11 -- although they did try to stop me on the way out to see a doctor (it would have been nice if they had informed me of that ahead of time), but I said "Not today" and continued on my way. I made it back to New Jersey in time for Ed and I to have some lunch before heading over for my Zometa treatment. Nothing spectacular there since there is no pre-medication needed, although I took an Ativan to prevent nausea since I suffered from it so badly after the first Zometa treatment. Once home, after a hot cup of tea and a half-hour of news, I was asleep before 6 p.m.

Nothing adverse to report this morning other than a slightly upset stomach. The steriod really bothers me so I've been taking 75 mg of Zantac usually at night to fight the sourness. No nausea today, which is a good thing, since I'm back in the city for work and my final skull treatment at 1:15 today. I'll also find out today what time my pelvic treatment will be on Monday. Since it involves set up, I'm assuming I'll be stuck with a 2, 3 or 4 o'clock slot, which will make for another long day.

The nurses at the chemo facility yesterday told me that the fatigue will likely increase next week before tapering off, so they recommended against doing anything but resting. So, looks like no housecleaning for me (bummer :) ) and we'll be laying low for Thanksgiving. I think we'll just cook up some spaghetti and sauce and open a nice bottle of wine and maybe watch a movie or two. What I'm looking forward to right now is no alarm clock tomorrow morning. Oh joy! Oh rapture! Let's see how long I can sleep...

Wishing you all a wonderful weekend and thanks, as always, for your support and caring.

Three down

After waiting another 30 minutes for my treatment yesterday, I was finished in about 40 minutes. It went fine and I managed to stay awake long enough to eat some dinner last night.

Today will be crazy. My appointment for radiation is at 9:45 and then I have to leave the city immediately to make my Zometa appointment in New Jersey at 2:30 -- and hopefully sneak in a bite of lunch in between. Last time I had Zometa (which was also the first time), you may recall I woke up the next day very nauseated. Today I'm going to take some Ativan prior to my treatment, since I have to come into the city tomorrow for my final skull radiation treatment (1:15 p.m.). On Monday, I'll have my single pelvic treatment and then I'll be done. At least I'll be home in time to have a decent dinner tonight and still hit the sack early.

No hair loss yet, but my skin is still pink. No noticeable sensitivity on my scalp, but I'm sure it's coming. Hope the wig doesn't bother it when that happens.

I'm assuming that my next Doxil treatment will be scheduled on or around December 19 and I don't know when my next scans will be. Will have to coordinate that with Dr. K and find out from Dr. Yamada's office when he will scan my skull and pelvis.

Until tomorrow...

More photos

Here's a link to the new photo album: http://good-times.webshots.com/photo/2911127090047569132uwjMQS?vhost=good-times This one is more general and includes lots of photos of our friends and their two kids. As you can tell, everyone is having a great time.

Yesterday's radiation treatment went fine after I was left waiting for 35 minutes past my appointment time. Once inside, the treatment took about 45 minutes. My appointment today isn't until noon, so I plan to arrive around 12:15. MSKCC was unable to get me an earlier appointment on Friday, so I'm now trying to move my Zometa treatment to next Tuesday or Wednesday. What a pain.

I was so exhausted last night that I went to bed as soon as I came home. No dinner, no visiting with Ed, just bed. I feel a little better this morning, but still tired. No hair loss yet, and the wig is still looking good. My skin is very dry and I'm still pink where I was tan. Moisturizer is helping with the dryness, but I think the pink is here to stay for a while.

Winter weather has arrived here this week. It hasn't been above 40 in three days now. Quite a change from our 80 degree weather in the Caribbean last week and our arrival in New Jersey to 70 degrees on Saturday. Maybe this year we'll get some snow!!!

Not too bad

After being given an Ativan to help relax me (and to help me sleep once I got home), I was taken into a new room for my treatment. It took about 30 minutes for them to adjust my head and the mask to match the previously taken films exactly. Once that was completed, they took more images of the first tumor and then performed the treatment. There were five "zaps" (I didn't feel anything, just heard the machine) lasting from 10 to 22 seconds each, and the equipment was rotated to a new position after each zap (for lack of a better term). Then they adjusted the equipment, took images of the second tumor and then performed the treatment again (same deal). In total, the session lasted about 90 minutes. The others this week will be shorter.

Afterward, I received my appointment time for today (11:25) but no others for the week despite my trying to nail them down. They did inform me that the earliest appointment they had for Friday was 1 p.m., which doesn't work for me because I have a 2 p.m. appointment in New Jersey for Zometa. I'm going to push that issue today, because I do not want to miss the Zometa treatment since I am at the outer limit for that.

Other than waking up after an excellent night's sleep with pink skin where my tan was, I feel fine. No loss of hair yet and no sensitivity on my head at all. That may change shortly.

I'll be uploading the rest of our cruise photos soon. And for those who were wondering, Royal Caribbean recommends that women wear a T-shirt over their bathing suit when using the FlowRider. I decided to wear my bathing suit cover up, which normally ends around mid-thigh but stretched out to hit me below my knees by the time my hour session was up. It may not have been the look some were expecting, but it kept all my bathing suit pieces in their proper places despite that rushing water!

Back to reality

First, I want to mention that we had a great cruise and Chris and Ian were mainly responsbile for that. We were able to spend quite a bit of time with them, and even spent some time with their kids on the FlowRider during our private session. Thanks so much, you two, for a wonderful vacation and for many more happy memories. You're the best!

I have posted my FlowRider and rock wall adventures on Webshots so you can see my progress. Here's the link: http://good-times.webshots.com/album/568729982LzOzvq?vhost=good-times

For those who need instant gratification, here are a few photos to satisfy your curiosity. I took a private lesson along with Philip and Carina, Chris and Ian's kids (that's them on the right).

First time in the water

Look Mom, no hands!

My statue of Liberty pose

Pride goeth before the...

wipeout!!!!

After a rest of three days (but still achy) I decided to try out the rock climbing wall. As I had never tried this before -- not even before my surgery -- I wasn't sure I would do too well, but I climbed higher than I expected.

Just starting out

I got about halfway up the wall before I got really tired and remembered I'm afraid of heights. I did better than I expected but not as well as I had hoped.

Other than relaxing, eating, drinking and hanging out with Chris and Ian, those were my main adventures. I had thought about doing a karoake video, but they wanted $29.95 for a three-minute DVD! We spent the entire cruise on the ship because our itinerary was changed due to Hurricane Paloma. That moved our San Juan visit to Wednesday from 7 a.m. to 2 p.m., which means we missed our opportunity for dinner with our friends Lydia and Wilfredo. We were very disappointed to have missed them again, and at that point we decided we were going to stay onboard the entire cruise and enjoy all that the ship had to offer. On the port days, we were even able to get chairs next to the pool at 10:30 a.m.!!! Unheard of on sea days.

We returned Saturday afternoon and after a quick pizza dinner, I went to bed and slept from 5:30 p.m. until 7:30 a.m. Then after breakfast it was off to the hair stylist to have my hair cut off and my wig fitted. I'll post those photos in a few days. I had to start my steriods yesterday morning in anticipation of beginning treatment today, and it took me three sleepless hours last night to remember that the steriod makes me wired. I finally fell asleep sometime after midnight and woke up at 2:40 a.m. I've been up since.

Dr. Yamada's office called an hour ago to ask me to arrive at 2:30 rather than 3 today, so maybe I'll get out a few minutes earlier than I expected. I'll post tomorrow about my experience. At least my abdomen in its post-vacation glory will remain hidden until next Monday. The bad news is that steriods usually make me gain weight, so it could be really ugly by then. I'm having a smoothie today in the hopes of losing a bit more than the 0.4 pounds I've lost since we got home.

Before I sign off, I want to wish Melinda a very happy birthday. You are a beautiful woman inside and out, thoughtful, caring, generous, brave, sensitive, and a fabulous story teller, and I'm so happy to call you my friend. I wish we were celebrating it in the SS United States all dressed up in our formal night finery. Maybe next year!

Should have mentioned the Aussies...

We are lucky enough to be sailing with our good friends, Chris and Ian, and their two children. We first met onboard Brilliance in May 2005 (can't believe it's been that long), visited them during our post-surgery tour of Florida in May 2006, and had dinner with them in New York this past summer. Since we recently celebrated our 20th wedding anniversary and theirs is next year, we've agreed to have 20 drinks together one night. That should be an interesting evening.

Chris and Ian are marvelous dancers, and we could spend hours watching them. One of the funniest moments onboard Brilliance was when Ian tried to get me to dance. I'm not a good dancer and I'm not good at following, so it was quite comical as he tried to lead me around the floor. Thank goodness Ed was videotaping it. It was even funnier to watch than it was to participate. They are headed back to Australia in the next year or so, and I suppose I'll have to start checking airfares to the land of Oz.

We're also lucky that we are going to have dinner in San Juan with Lydia and Wilfredo, who were also on that Brilliance cruise. Lydia and I share a birthday and have kept in touch via e-mail all these years. Our last plans to meet them for dinner went awry, so we are looking forward to spending some time with them. They also happen to be terrific dancers, and Wilfredo and I share a love of good red wine. I don't think we'll be able to get them to dance during dinner, but I'm sure we'll enjoy ourselves.

Can't wait to see you all!! Now I'm starting to get excited...

Leavin' on a jet plane...

Before we head off for warmer (although potentially rainier) places, I wanted to update my schedule. My first treatment -- to the clivus and two mets in my skull -- will take place on Monday, Nov. 17 at 3 p.m. I usually take a 4 p.m. bus home, but that will not be the case that day. I can't get a schedule for the remaining five treatments until I arrive that day and put in my time request. My plan is to ask for a time somewhere between 9 a.m. and noon. That way, I can do my work in the office first thing, go up to MSKCC and have treatment, and come back with plenty of time before I leave for the bus. We'll see how that plan works out.

I also have a follow up with Dr. Healey that morning, plus x-rays in advance of that appointment. Guess I'll be spending quite a bit of time at 68th and York that day.

I will be basically out of touch during our trip because I am taking a computer break other than the time I need to spend doing my work each morning. So don't panic when you don't see any updates. I'll post about my vacation, hair, wig, and treatment experiences after we return. Thanks to all who wished us "bon voyage."

Treatment dates

I received a call this morning with my treatment schedule, although I don't have times yet. They plan to do the clivus and two skull mets during the same treatment, and those will run from November 17 through 21. My pelvis will be done on November 24. I have to start my steriods on November 16 and I'll be taking them for 12 days. One of the side effects of the steriods is increasing your appetite. Can you imagine what Thanksgiving will be like??? Ed's going to have to serve my food and keep me away from any leftovers. And this will start right after vacation with its attendant weight gain. Yikes!

I ordered some recommended skin lotion and hair care products so I'll be ready when the treatments begin. I hope the wig doesn't irritate my scalp, but I won't know until I try it. And for those who were wondering, I'm not planning to go for a Sinead O'Connor look when I cut my hair but just something short enough that it doesn't make the wig difficult to put on. After all, I plan to wear it to work and when we go out, but not at home or with friends. My bald spots will show, but I assume Ed won't mind. :)

We got out most of our vacation gear over the weekend, with the exception of some items that need to be picked up at the dry cleaner or were in the laundry. I hope to finish the piles up by tomorrow night. We're getting this down to a science. All that will be left will be packing the suitcases and printing out our boarding passes. Then it's bon voyage!!

My hair

As mentioned yesterday, the radiation will cause my hair to fall out in the areas where the beams are aimed -- near the crown of my head and at the base of my skull. That doesn't seem like a big deal to me and under normal circumstances I would leave my hair alone and try to cover the bald spots with all the stuff that's up there -- and there's a lot! Unfortunately, though, my decision when I turned 40 to color my hair (which until then I swore I would NEVER do) has come back to bite me in the butt. I can't color my hair if I'm getting radiation, because my scalp will be too sensitive. So what does one do when one has dark brown hair and has no idea how grey she really is?? She orders a wig and plans to cut her hair very short.

So, I will have my hair cut on November 16, which is the day before my treatments should begin. Over the course of the next four months, as my hair falls out and then eventually grows back in, I will discover exactly how grey I am and then I'll have to decide whether to color it again once I'm able to. Decisions, decisions. In the meantime, I ordered my wig, so in public at least I'll still have long hair, and it will look much better than mine ever did on a daily basis. And to those of you who may be wondering, I'll still be a brunette. No blonde or red hair for me. As a friend recently pointed out, I still need to match my eyebrows!

Such fun!

Shortly after I arrived for my simulation yesterday -- after practically getting blown off my feet by the wind gusts here in NYC -- I was called in. Unfortunately, I then discovered that my treatments had been scheduled starting on November 11, on which day I will be somewhere in the Caribbean. No worries, the scheduler will work out a new plan. I change into a lovely blue robe, get set up on the table, am aligned perfectly and then the body molds are placed under me. As they expand they heat up, so it was nice and toasty laying there -- at least for a while. Then they draped the face mask material over me. It's a thick, fine mesh and they pinch it around your nose and press it down over your eyes and mouth. Consequently, as it dries, it pulls against your entire face, including your eyelids and mouth, until it feels like your eyeballs are getting squashed and you are practically unable to open your mouth.

Unbeknownest to me, they experience a computer glitch and can't get the scans done until it's fixed. Meanwhile, I'm laying on the table with this thing getting tighter and tighter over my face. I calm myself for quite some time by thinking of petting Spot (the greyhound who used to live with us) under his chin where his fur was soft. That works even through several times when I think I can't take it anymore, and then finally, I crack. I can get my mouth open enough to call out that I'm starting to panic, and the doctor who wouldn't/didn't return my calls comes over and says that it's going to take a little while since they are trying to line up all three radiation areas. She fails to mention at that point about the computer glitch, but suggests I take a few deep breaths as she pats my arm. I start panting through my mouth and I can feel my lips shaking, I can't open my eyes and I can barely move my jaw enough to swallow, but somehow I manage not to completely freak out. I don't know how much longer it was until I was told of the glitch and asked if removing the face mask would help me feel better or did I want some drugs? (How would I have taken the drugs without removing the mask??? Duh.) The mask is removed and the tech cuts out a hole for my nose. Once the glitch is repaired and we begin, the face mask is put back on and the nose hole makes a huge difference in how I feel in it. I still can't open my eyes and can barely open my lips, but I don't feel as trapped in it.

As I lay there, two techs take measurements and pull open my robe because they need to make marks on my stomach and sides with a magic marker. With the mask on, laying on this body mold, unable to see, I feel like a slab of meat. They aren't talking to me because they are reading numbers off to each other, and I feel slightly humiliated. I also kick myself for not doing stomach crunches for the past 25 years, especially since after they finishing drawing on me, they take photographs!! Now I feel really humiliated, but at least it will be difficult for anyone to tell who I am since my mask is still on. Afterward, they remove the mask and then give me four little tattoo dots on my sides and abdomen for lining up the markers when they radiate my ilium.

All told, it was about a 90-minute ordeal, and I'm not looking forward to splaying myself out on the table again, although the radiation for the ilium is one time only, so I guess I'll have a little modesty when they radiate my skull. I have to wait at least until early next week for my treatment schedule, since the scheduler is on vacation and the doctor didn't want to trust my schedule to the temp. I will have to take steriods when they do my pelvis, so I should look like a wrestler (or professional baseball player) for several weeks afterward. I've also decided that I will cut my hair short and get a wig since I'll lose my hair in two places from the radiation and it will be easier to care for my skin if I have less hair. I'll be certain to post a wig photo at a future date.

So that was my excitement for this week. Never a dull moment around here and so many new experiences. I'm so happy I can share them with you, because what fun would it be to keep these events all to ourselves?? :)

Random thoughts

I learned today that a former neighbor has been diagnosed with breast cancer. A recent mamogram hadn't revealed anything, but a few months later she discovered a lump in one of her breasts and followed up. She is headed to MSKCC this week for a second opinion. She's picked the best place to determine the extent of the disease and what her treatment options are. I just wanted her to know that I'll be thinking about her. She's one tough woman, so I expect that she'll be ready to battle whatever is thrown at her.

Last week I learned that the man who had driven my morning bus into the city for the past six years killed himself. This occured while I was working from home. Apparently he was going through a divorce and had lost his fulltime job, and he told a friend that he felt he hadn't accomplished anything in his life. I don't know exactly how old he was, but with two sons in college, I would guess he was in his mid to late 40s. From what I understand, he had already lost his job the last time I rode the bus back in mid-September. I didn't know him well, but he seemed the same as always and never hinted that he wasn't going onto his job after dropping us all off. I'm still trying to wrap my head around it. It's such a shame that he felt so lost that there must have seemed to be no other option. There is no way that I could have known (we chatted, mainly about his sons, but nothing else), but I wish there was something I could have done or said. Now it's too late for everyone, and it seems like such a waste.

This stock market just doesn't seem to know which way to go. Today's early reports are expecting huge gains, although yesterday's pre-opening expectations were for a total bust. I imagine many of you are doing what we are doing: holding off on purchases, cutting back on eating out and entertainment, thinking long and hard about a budget for the upcoming holiday season, and worrying a bit about keeping our jobs and our health insurance. Personally, I am just riding this out. I had no idea that the market would fall this far, and I have no idea where the bottom is (if I did, I wouldn't be worrying about money because I'd be Warren Buffet). I wasn't smart enough to pull my money out back in January when the market started to head south, and there was no point in pulling it out when the market was already down. If I was holding cash, I'd sit on it a while longer, but since I'm still fully invested for my retirement (ha ha), I'm planning to wait this out. Theoretically, I've got 20 years until I need the money, so there's no point in sweating it now.

On the other hand, many people are worried about their jobs and rightly so. So far, we've been lucky here that our partners also have decided to ride this market out and not pull their investments from the fund. This would be a tough time to find another job, and it's health insurance that I am most worried about. It's difficult enough to pay the balance of the bills from MSKCC. If we didn't have excellent health insurance with out of network benefits, I wouldn't be able to go there at all. Thank goodness we found the NJ chemo facility (despite the problems I've had there), since it's saved us quite a bit in out of pocket payments since June. The economy will eventually turn around, and I hope that all of us can hang on until it does.

So much to write, so little time

I've tried several times today to post an update, but it's been busy around the office today. (In this market, I suppose that's no surprise.) I'll try to write more this week, but here's a brief update.

The doctor at the NJ chemo facility prescribed twice the amount of Benadryl that MSKCC did without my realizing it. Consequently, within just a few minutes of the IV ending, I felt like I was going to pass out and then started to get lower back pain along with what I would consider restless leg syndrome. The nurse immediately told me that it was too much Benadryl. She ran some additional saline to try to clear some of it out before starting the Doxil and did another 30 minutes of saline after my treatment finished. Unfortunately, it was too late. I was exhausted Friday night but couldn't get to sleep until after 1 a.m. because of my back and the twitchy feeling in my legs. No position helped and neither did a heating pad. I was not too awake on Saturday.

We drove out to Pennsylvania to visit an old friend and her husband on Saturday, and it turned out to be a long and tiring day. Two hours out and two hours back in rain and wind, and even though the temperature was mainly in the low to mid-60s, I couldn't get warm. I was very glad to see her and so glad we went, but by the time we got home, I was done. I slept 12 hours Saturday night, woke up Sunday with lots of energy, and petered out by 11:30 a.m. I managed to get a few things accomplished (I painted pumpkins for the first time -- lots of fun) and then spent the rest of the day feeling tired and drained. After 8 hours of sleep, I'm still pretty tired but it was a work day, so we were up with the alarm at 4:15.

I go tomorrow to MSKCC for my simulation, where they will take additional CT scans of my brain and pelvis, put some tattoos on me for lining up the machines, make my face and body molds, and generally not let me have a good time. This all will take at least two hours, so tomorrow will be a long day.

I'll report back as soon as I can to let you know how I made out.

A Decision and a Changed Opinion

After chasing Dr. Yamada's colleague for more than a week, I finally asked his coordinator if I could fax over my questions and have someone get back to me with the answers. Within 30 minutes, Dr. Yamada called and we discussed all of the issues I had raised, including adding treatment for the skull met that is bothering me. My conversation with him confirmed what I had felt from the beginning: If we were to choose a modality based on expertise alone, he leads the pack hands down. After speaking with Ed, we decided to go with Dr. Yamada and IGRT. I feel very comfortable with this decision and feel that I am in very goods hands -- with the exception of his colleague, but perhaps I won't have to deal with her very much.

His assistant called me at 7 p.m. last night to go over a few outstanding issues, and they are working on the insurance end of things. I have a simulation scheduled for next Tuesday, where they will create the plastic mask that holds my face and head in place for the treatment as well as the body pad for my pelvis. I believe the treatments will begin on November 17. With that in mind, I will be going for my scheduled Doxil treatment today, which will provide the three week "off" period that Dr. K was looking for.

The doctor we saw for the CyberKnife consultation coincidentally called last night to follow up and see if we had any additional questions. He had left a message before I got home from work and actually called again during dinner. I called him back today to relay our decision, and we spoke for 20 minutes. Although he lacks the experience of someone like Dr. Yamada, I came away very impressed with his patient skills. He stated that he felt the consultation did not go as well as he would have liked, which was why he was especially interested in following up with me. I told him it was the first time I had had a doctor reach out to me and I very much appreciated it. We discussed several aspects of my treatments, and he offered himself as a contact should I have any questions about any type of radiation therapy. I think he realized that he had not really been present during our meeting and made a serious effort to make up for that. I had made the return call dreading the conversation and actually ended up with a much more favorable opinion of him. After all, we all have our off days and doctors must have them as well. I told him that we had not ruled out CyberKnife as a future treatment option and that we would be in touch if necessary in the future.

So I feel like a large weight has been lifted off my back. I feel that I am in very competent hands and that Dr. Yamada and (most of) his team have my best interests in mind as they plan my treatment. Now to deal with the financial issues...

Thanks as always to everyone who kept us in mind as we went through this trying period. I feel I have a better understanding of the various options and I think getting a second opinion about treatments is a necessity. Now I can rest a little easier.

Still deciding...

We met with the radiation oncologist at the CyberKnife center and were not overly impressed with him. He checked his watch at least four times during the 40 minutes or so he spent with us, checked his Blackberry at least five times and answered his cell phone once. He seemed very hesitant to compare CyberKnife with IGRT, especially after telling us that Dr. Yamada is a pioneer in the IGRT field.

He also said that studies had shown that more regular (conformal) radiation treatments at a lower dose results in better pain management for bone mets than a single treatment. Therefore, he was recommending 10 treatments to the met in my pelvic bone vs. the MSKCC recommendation of one treatment. I have since done research that shows that there is not a significant benefit to performing multiple treatments vs. a single treatment, so if we decide to go with the treatment at Riverview, he is going to have to show me his studies. Otherwise, I will agree to no more than five treatments, but preferably one.

With respect to the clivus, he recommended the same number of treatments as with IGRT: five. If they do the other skull met at the top of my head that has been bothering me, that would be an additional three treatments. They may be able to perform them on the same day, but are afraid I would be on the table too long for comfort.

At Riverview, the radiation oncologist works with a surgeon specializing in the field of the met, so we had a consultation with a neurosurgeon on Monday. (In a strange coincidence, he was the same neurosurgeon who examined my dad in the emergency room after he passed out and hit his head back in October 2005 -- a month before he died of heart failure.) We told him we were not impressed with the other doctor and that we felt he hadn't sold us on CyberKnife vs. IGRT. We discussed the advantages that CK has in better targeting the tumor and being able to track movement during the treatment (which IGRT cannot do). He answered our questions competently and told us that he would be responsible for outlining the area of the tumors to be treated with CK. The other doctor would determine the amount of radiation to use and the number of treatments I would have. He assured us that the radiation oncologist was a superb doctor and very competent.

At this point, I think we are both leaning toward CK because of its ability to adjust if I move my head during treatment. If we weren't discussing my brain, maybe this advantage wouldn't mean quite as much, but there is too much to avoid in the brain so the better the accuracy, the better chance of avoiding the brain stem, pituitary gland, nerves, etc. There is also a good possibility that the treatment may be covered in-network. We won't know until the end of this week if the CK will be covered, as Oxford asked the doctor's office to supply additional clinical information. If it is not, it would be treated the same way as the IGRT treatments would be treated at MSKCC -- out of network where Oxford would pay a portion of the cost.

In either case, the plan would be to do all the set up work (new MRI/CT images of my head and pelvis, create the face mask to hold my head in place and the body pad that would hold my hip in place) prior to our leaving for our cruise and begin the treatments as soon as we return. Therefore, I'm going to go ahead with my Doxil treatment on Friday, as I will still have the three weeks off prior to radiation treatment that Dr. K wanted. I will have to wait three weeks after the radiation treatments are finished before having another Doxil treatment. I can continue Zometa infusions during radiation treatment.

So we are getting closer to a decision, but it's been difficult. I can't believe that I'm even discussing having radiation treatments to my brain, but I feel I have no choice. I do believe the tumor has been there for some time, as a comparison of the most recent brain MRI to the one done back in January 2006 shows something in the clivus, although the neurosurgeon thought that the most recent scan shows a stronger signal. This information brings up another issue: it seems my doctors have been reading the radiologists' reports but not looking at my scans. In the future, I will refuse to see a doctor until he or she has actually looked at my scans.

I just spoke with Dr. K, who seems a bit put out that we are seriously considering CK. She is contacting Dr. Yamada's colleague to find out what the advantages are of one treatment vs. the other -- something I have been trying to find out for a week now but haven't had any success in getting the doctor to return my calls. She suggested that if the treatment being in-network was an important issue for us, we should fight with the insurance company to have the IGRT paid in full since it is unlikely there is an IGRT expert in-network who has experience with treating the clivus. Do I really need to add fighting with the insurance company to my plate? Isn't that something the doctor's office should address? I'm about ready to throw my hands up with these doctors. I'm finding all of them more frustrating than helpful.

I'm signing off now so I can let off some steam.

Brief note

Just wanted to let you know that we had our consultation with the doctor at Riverview regarding CyberKnife today and have some decisions to make. We had anticipated that after hearing CyberKnife was an option our decision would be a slam-dunk, but it is not. I will post again once we've made a decision.

Not a fun weekend

Saturday morning I woke up very nauseated and achy. Had some dry toast, took a Zantac 75 and went back to sleep for two hours (despite having just slept for 10 hours!). I finally got up at noon and managed to get down some more dry toast, tea, some applesauce and had some cereal for dinner. Upon laying down to go to sleep (again), I started up my cough, which has been plaguing me for about a year now and has gotten much worse over the past few months, and reached the point of vomiting. Not my favorite thing to do, as I've written before. After another full night's sleep, I felt better yesterday, but have been taking it slow on the food front.

I wrote Dr. K today and asked her to have an ENT at the hospital review my films for any abnormalities in the sinuses, throat and esophagus. I would like someone to at least take a look, as this cough is not going away. I will let you know the outcome.

Other than that exciting adventure, things have been quiet. The next event is our CyberKnife consultation on Thursday. I will update you after that.

The end of another crazy week

Just wanted to update you on the happenings since Tuesday. I had my first Zometa treatment today. It was very easy -- a quick check of my bloodwork, then a 20-minute infusion. I asked the doctor why I needed to do this by infusion rather than taking a pill (like Boniva or Fosamex). It turns out that Boniva is 50 times as strong as Fosamex and Zometa is 1000 times as strong as Fosamex. Guess that answered my question. It's used as a treatment for bone metastases regardless of the original cancer diagnosis and was first tried in breast cancer patients. The benefits were so apparent that it's now a standard treatment for bone mets.

I received a call today from the CyberKnife center at Riverview Medical Center here in NJ, and I have a consultation next Thursday. From what I have read, this is a better way to go than IGRT as it is more precise and delivers stereotactic radiation managed by computer via rotating arms. The radiation is delivered from all sides in small doses and can truly pinpoint the tumor while sparing as much of the healthy surrounding tissue as possible. As the cherry on the sundae, the doctor is in-network!

I've contacted Dr. Yamada's office to discuss the advantages of IGRT over CyberKnife and vice versa and also to let them know that I'm seeking a second opinion. I didn't want them to plan out an entire schedule for me only to have me put it on hold. I also contacted Dr. K's assistant so she will know what is going on. As I found out, I really need to keep her in the loop.

So, some progress is being made in the decision about how to best treat my clivus met. I'm not looking forward to radiation in any form, but I have no choice here. As the doctor at the oncology clinic said today, we need to make a pre-emptive strike on this tumor before it causes serious, permanent nerve damage.

Have a great weekend everyone!

Radiation

I don't feel entirely comfortable updating you at this point because I don't feel that I have done enough research to properly inform you of my choices. However, I know that some of you were waiting to hear about the outcome of our appointment yesterday, so here it is.

Dr. Yamada is recommending five high-intensity treatments to my clivus using IGRT (Image Guided Radiation Therapy) and one treatment using regular radiation to my pelvic bone. He is suggesting leaving the other skull met (the one near the crown of my head) alone for now since there is no impact on the brain at this time.

He is concentrating on treating the clivus because there are nerves very close to it that affect the face and eyes. His concern is that any damage that may be done by the growth of the tumor could be permanent, so he would prefer to try to destroy the tumor before I feel any effects. The potential side effects of the radiation treatment -- in addition to the usual issues of swelling at the site of the tumor, sensitive skin, fatigue, and hair loss in the radiated area -- over the long term are fractures of the clivus, cancer caused by the radiation, and damage to the pituitary gland which may result in hypothyroidism (controlled with medication). I thought I had included a link to an MRI image of where the clivus is located, but apparently I didn't so here it is: http://rad.usuhs.mil/rad/radbrowser2/index2.html With any luck, that will take you directly to the side image of a head and if you move your mouse around the image, you will see the different areas. If it takes you to the main page, you want Head & Neck, then MRI, then Sagittal view.

I asked him about using RFA (radio-frequency ablation) for the pelvic tumor rather than radiation, and his response was that if the radiation didn't work, RFA would still be an option. It is my understanding that RFA is a better option for bone mets, but I need to do some re-reading. I believe his thinking is that the less invasive option is the better one, while I think the option that has the fewer long-term potential side effects is the better one, regardless of the level of invasiveness (if that's a word). Anyway, this is one of the areas where I don't really feel knowledgeable enough to state what I think is best. There is more reading to be done.

I can't have any radiation within a week of having Doxil, because that chemotherapy does not react well with radiation. So, his nurse practioner will contact Dr. K's office to discuss a possible schedule for treatment. My guess is that I may go in the last week of October to have scans done and a face mask made (to hold my head completely still during treatment), and the week of treatments will be performed in mid-November after our vacation. Don't hold me to that, though. He said it's important to do the treatment, but it's not so urgent that it needs to be done next week. He said we should definitely plan to take our vacation and they will work out the scheduling details.

My Zometa treatments will begin on Friday and are supposed to be done every three weeks. That means I can get one more before we leave and will be due for another a week after we return. I don't think I need any bloodwork prior to this treatment, and the infusion is 30 minutes.

On a final note, 20 years ago today at 2:00 p.m., Ed and I exchanged our wedding vows and started off on "Ed and Karen's Excellent Adventure." It's been a trip full of beautiful vistas, mudslides, sunny skies, dirt roads, soft breezes, snowstorms, and calm seas, and somehow we have made it through the good and bad times mostly in one piece. Although there have been moments when we thought we wouldn't make it through another day (let alone another year), overall -- and after all -- we feel compelled to say that life is good. The past few years -- especially this year -- have been difficult due to my health, but we have risen to the occasion and try to fight this as a team. I know it hasn't been easy on Ed, but he keeps on doing and fighting and questioning and soothing and prodding, and I honestly don't know what I would have done or would do without him. So here's a toast to us!

October already

Where has this year gone? I can't believe it's October already. Seems like yesterday that I was planning for our Europe trip. I guess we'll have to start packing for our Liberty of the Seas cruise soon. I'm thinking we'll probably just take the same things we took to Las Vegas and Texas since we've decided to skip formal nights on this cruise. It will be nice to soak up the Caribbean sun while it's chilly at home in November.

I'm hanging in there but it hasn't been wonderful. I had a headache for three days and nothing I took helped it. The headache is gone now but I still have the drippy sinuses and the cough, and today my stomach is upset. I still have to watch for fever and infections, because it can take up to two to three weeks for my blood counts to drop. What fun. Other than that, I'm feeling okay, getting lots of sleep (9-11 hours a night), and enjoying my working at home. Next Tuesday we have an appointment with the other radiation oncologist, whom Dr. K has given her seal of approval. I'm still waiting to hear from my local oncologist about the Zometa treatment and setting up future Doxil treatments in-network.

I'll be back to report on the meeting with the radiation oncologist.

Up to the Doxil challenge

Except for one five-minute period of weirdness, I made it through my Doxil treatment. They start off with an infusion of Benadryl and then start the Doxil at a very slow drip while the chemo nurse (in this case, one of my favorites, Bridget) watches for a reaction. Everything was going along fine and she had bumped the rate up twice. Dr. K stopped by to see how I was doing and I had a bunch of questions to ask, which I managed to get answered before I needed to visit the restroom. I was feeling as if I were filling up with gas. Having nothing happen during my visit, I then felt like I was having menstrual cramps. Bridget paused the infusion and I was given a hot pack, which I placed on my abdomen. Within minutes, I felt fine and encourage Bridget to turn the pump back on, but she had placed a call to Dr. K (who disappeared as I headed for the restroom). About five minutes later, having the all clear from Dr. K, the infusion was re-started and I finished without incident. We don't know what the problem was, maybe a combination of the sandwich I ate just before treatment started plus the Coke I drank (I usually don't drink soda). No one thought it was the Doxil, since it was at least halfway through the treatment. I feel fine today except for being tired and a little flushed, which is normal.

I was surprised to have a message on the answering machine when we got in that I'm scheduled for my next treatment at MSKCC on October 17. It was our understanding that Dr. K was going to speak with the oncologist in New Jersey and set me up to have the rest of my treatments there, plus the Zometa infusions. She said she e-mailed Dr. Greenberg but hadn't heard back. I'll have to call on Monday to see if my little incident led her to change her mind or if there was a miscommunication between her and her back office.

I currently have an appointment with the other radiation oncologist on October 7, but Dr. K didn't know anything about it. She's going to speak with the first doctor I saw to find out about this referral and get back to me. I'm happy for her to look into that, because she needs to be the quarterback and oversee all the plays. I'll let you know what happens. I also reminded her about consulting with an ENT about this ongoing cough. Gotta keep on top of things!!

My plans for the weekend are just to relax and get rest. It can take up to two weeks for my blood counts to be affected by the treatment, so we'll keep an eye on my temperature as well as any strange feelings or aches. It looks like I'll be scheduled for treatment every three weeks until she decides it's time to scan again, which will be in two to three months.

Thanks for all the e-mails and comments of encouragement. I could feel a lot of positive energy flowing my way yesterday and I was so pleased last evening that I was going to be able to report a good outcome. :)

Doxil

Tomorrow is Doxil day. Keep your fingers crossed that it goes well. I'll report in as soon as I feel up to it.

Bon voyage to Steve and Kate who are off on another adventure at sea. We're all jealous but hope you have a fabulous time!

Happy autumn!

It's hard to believe that summer is now officially over, but welcome autumn! My two favorite seasons have always been spring and autumn, so despite the fact that I'll miss looking out at and being in the pool (we closed it yesterday), I'm happy to feel the chill in the air.

We received a call on Friday afternoon from the radiation oncologist's resident that one of the specialty radiation oncologists would like to see me. He performs IGRT -- image-guided radiation therapy -- which uses CT and MRI images to map a tumor in three dimensions, resulting in a more targeted treatment and less damage to surrounding tissue. That doctor is away for the week, but we will arrange to meet with him in the near future.

In the meantime, my first treatment with Doxil is confirmed for Friday, September 26. I've really enjoyed the five-plus weeks I've been off chemo, even though I knew I would be back to it eventually. The Gemcitabine caused problems -- although they were minor, they interrupted my life. At least we had gotten a handle on the related nausea. I guess we'll have to see what I need to take along with the Doxil.

I'm enjoying working from home again and have already cleaned up my "office" space, which was quite a mess. In my spare time, I've been printing photos from our recent trip and getting photos out to our friends. I've even been riding the exercise bike! One of these days I'm going to get the DVD of our Europe trip done, but that requires a chunk of time. Maybe one of these weekends...

You can stop tapping your feet

I know I should have written yesterday, but the market has been a little crazy lately and I've been busier at the office . Thanks to all who wrote me essentially to say, "Post to your blog, girl! We're waiting on you!"

Dr. K called me yesterday afternoon and it boils down to this:

(1) It never occurred to her that the tenderness on my scalp could be a bone met. I'm now okay with this, as the more I've read, the more I've learned that bone mets are very rare in LMS. She should have followed up, though, and I should have spoken up when the tenderness didn't pass after several months. Lesson learned on both sides and enough written on this issue.

(2) She is very concerned by the radiologist's opinion that a met in my skull is taking over the bone marrow and this is what she wants to go after, if possible. She still hasn't seen the scans on CD (turns out it's a computer glitch at the imaging center) but her assistant is working on getting them. Therefore, we still have no final count of how many or how big. That's also why we still have no response on whether the lesion in the ilium has grown since my last scan. I do plan to get that answer once they receive the CD.

(3) We are starting treatment with Doxil next Friday, September 26 around 10 a.m. I will have the first infusion at MSKCC because 20% of patients experience a severe allergic reaction to this medication and we agreed that MSKCC would be the best place to be if that happened. I have no allergies, so I expect to be in that 80%. If I have a reaction, she will terminate the infusion immediately and the next treatment would be AIM (Adriamycin [doxorubicin] and Ifex [ifosfamide] and Mesna [a urinary tract protector for use with Ifex]). Doxil is actually an incapsulated form of Adriamycin and mimics a fat cell when it enters the body. If my body sees it as another of my fat cells, no reaction. If it sees it as a foreign fat cell, allergic reaction. There is more information on Doxil and AIM here, although it may be a little dated: http://www.leiomyosarcoma.info/chemo01menu.htm

(4) I will have a 15-minute infusion of Zometa at each treatment (Doxil is given once every three to four weeks). Zometa is one of the biphosphonates I wrote about the other day. These drugs interfere with the way bone is destroyed and rebuilt, and are usually prescribed for women who are in danger of developing or have osteoporosis.

(5) Once I have cleared my first infusion, I will go back to New Jersey to have the treatments. That way I can stay in-network and continue to pay $20 per treatment.

(6) After two to three months, I will have my usual chest/abdomen/pelvis CT scans plus a skull MRI to check for results. Unfortunately, she told me that bone mets are very difficult to evaluate for response to chemo (which may be why I've read that chemo doesn't affect bone mets). However, the Zometa may help in this area and stop -- if not reverse -- the growth of the bone mets.

(7) When I see her on the 26th, I will ask what the next step would be if there is no response from Doxil: AIM or the clinical trial for a new drug that she is overseeing at MSKCC. Participants in the trial must have no response or growth on doxorubicin in order to enter it.

So that's where we are. I know that this is a serious situation, but since I feel the same (other than the continued tenderness on my scalp), it's difficult to grasp. I keep replaying in my head one of the famous scenes from 1975's "Monty Python and The Holy Grail." The entire movie is a typically insane piece of Monty Python work, and I believe you have to have a very strange and dry sense of humor to appreciate it (which apparently I do). However, hoping that I won't be fined for violating any copyright laws and hoping even more than you will find the humor (albeit sick) in this, here are the lines from that scene:

The Dead Collector: Bring out yer dead. [a man puts a body on the cart]
Large Man with Dead Body: Here's one.
The Dead Collector: That'll be ninepence.
The Dead Body That Claims It Isn't: I'm not dead.
The Dead Collector: What?
Large Man with Dead Body: Nothing. There's your ninepence.
The Dead Body That Claims It Isn't: I'm not dead.
The Dead Collector: 'Ere, he says he's not dead.
Large Man with Dead Body: Yes he is.
The Dead Body That Claims It Isn't: I'm not.
The Dead Collector: He isn't.
Large Man with Dead Body: Well, he will be soon, he's very ill.
The Dead Body That Claims It Isn't: I'm getting better.
Large Man with Dead Body: No you're not, you'll be stone dead in a moment.
The Dead Collector: Well, I can't take him like that. It's against regulations.
The Dead Body That Claims It Isn't: I don't want to go on the cart.
Large Man with Dead Body: Oh, don't be such a baby.
The Dead Collector: I can't take him.
The Dead Body That Claims It Isn't: I feel fine.
Large Man with Dead Body: Oh, do me a favor.
The Dead Collector: I can't.
Large Man with Dead Body: Well, can you hang around for a couple of minutes? He won't be long.
The Dead Collector: I promised I'd be at the Robinsons'. They've lost nine today.
Large Man with Dead Body: Well, when's your next round?
The Dead Collector: Thursday.
The Dead Body That Claims It Isn't: I think I'll go for a walk.
Large Man with Dead Body: You're not fooling anyone, you know. Isn't there anything you could do?
The Dead Body That Claims It Isn't: I feel happy. I feel happy.
[the Dead Collector glances up and down the street furtively, then silences the Body with a whack of his club]
Large Man with Dead Body: Ah, thank you very much.
The Dead Collector: Not at all. See you on Thursday.
Large Man with Dead Body: Right.

What we learned today...

We had a long meeting with the radiation oncologist, who spent more time with us than I think he intended to but didn't rush us along. Unfortunately, the day I had my MRIs done was the day the imaging center changed computer systems, and they are having some difficulties getting the films onto CD, which is what MSKCC uses to get them into the main computer system so all the doctors have access to them. Therefore, this doctor hasn't seen the "real" films either, only fuzzy copies of them.

Basically, he told us I have multiple mets in my skull -- at least two, but he's unsure exactly how many or where they are since he hasn't seen the films. The one of most concern is the one in the clivus, which is located about in the center of my head. According to the radiology report, the met in that bone is spreading forward into the frontal bone in the area probably behind my nose somewhere. If you look at the skull diagram from my recent post, you'll see that the frontal bone starts at the forehead and extends all the way down the face behind your nose and wraps around under your cheeks. The clivus is back in there where the frontal bone meets.

Because of these multiple mets (plus the likely one in my ilium) and the fact that none of them are causing me pain, his inclination is to watch and wait (which is what Dr. Healey recommended). He will recommend to Dr. K that chemo be resumed but that she might try a different medication. I'm not sure why she would do that since bone mets cannot be treated with chemo, but I'll discuss that with her when she calls me, likely tomorrow.

I've been reading about biphosphonates, which are medications sometimes given in addition to chemo to prevent or stabilize bone mets. The most commonly known one in LMS circles is Zometa, but the Sally Fields-advertised Boniva is a biophosponate. It works to prevent the destruction of bone, and cancer cells definitely destroy bone. The rare but serious side effect to these biphosponates is the deterioration of the jaw bone. Why she didn't suggest this when she started me on chemo I simply do not know. Another question to ask.

So, no surgery because there are too many bone mets. No radiation because there are too many bone mets. We'll find out tomorrow about chemo suggestions, and then I'll have to confirm that MRIs will be done on my skull every two to three months following a round of chemo. If and when there is a change in one of the mets or I begin having problems, we will revisit the surgery or radiation options.

For those of you who are familiar with my annoying, constant cough, it's possible that the met in the clivus is affecting my sinus and causing the post-nasal drip, which makes me cough. The radiation oncologist suggested that I see the ENT person at MSKCC to see if there is any problem within the sinus. I'll ask Dr. K about that referral.

It is our humble opinion that both Dr. Healey and Dr. K definitely dropped the ball here -- although I must take some of the blame. Two areas in which I have mets are places I mentioned as tender or sore, and I've been complaining about this post-nasal drip/cough since last October. I should have pushed for tests, but as cancer specialists at what is supposed to be the best cancer center in the world, you would think they would have been vigilant for bone mets since I was a rare bone primary. I should have had a bone scan no longer than a year out from my last one, which would have put it at November 2007 -- about a month after my scalp became tender. At that point, we may have only one or two to deal with and therefore had more options.

This experience really leads me to question any doctor, even the so-called "experts." Don't let what has happened here happen to you: Question everything and speak up when you think something is slipping through the cracks. I wish I had.

I'll be back after my discussion about chemo with Dr. K.