Scan week is...next week at MGH

I think I have it figured out....the pain in my back/side. It's the sciatic nerve, I'm pretty sure. During one of times that my back went out--about 10 years ago, at that time I also had a problem with the sciatica and had it X-rayed. I was seeing a chiropractor at the time, and he told me that I had arthritis in the sciatica. Maybe it's bothering me again because of the damp and outright rainy weather we've been having lately....hmmmm, well today was dry and beautiful and it is acting up again. The worst of it is when I'm trying to sleep, it seems to rear it's ugly head...there is absolutely no position in bed that is comfortable. Aspirin has helped, but I am trying to not be popping them constantly.

Next week is Scan week...I am seeing Dr. Michaelson, having a CT scan, a visit to the nuclear cardiology lab for a scan, bloodwork and an EKG. I just hope that I pass them all this time. I am a little anxious about the CT scan, wondering if it will show how aggressive or not aggressive this is going to be...and also hoping that this pain in my back/side area is not anything unexpected. Well, next Thursday will be here soon enough...

Last night I watched the special on the life of Randy Pausch...full of child-like enthusiasm for...life! It was so inspiring and moving, he was a very special person, very thoughtful about having fun, living life to the fullest....at one point he said, "Someone’s going to push my family off a cliff pretty soon and I won’t be there to catch them and that breaks my heart. But I have some time to sew some nets to cushion the fall so that seems like the best and highest use of my time and I better get to work". He was remarkable....

A life well lived....

Randy Pausch died on Friday...he was the professor at Carnegie Mellon University who gave a lecture, his last lecture, back shortly after he'd been told that he only had a few months to live, having just been diagnosed with pancreatic cancer. I have followed his story and listened to his talk....he did the lecture for his kids, who are 2, 4 and 6...it was videotaped for them to listen to in future years, and many friends and collegues gathered to listen. They gave him a 4 minute ovation before he even started. He was so highly thought of in his profession in computer science, that during his tenure at CMU, his students would bring their friends and even their parents to listen to him lecture....he was beloved. If you have a few minutes, click on to the link and listen to the extraordinary way Randy Pausch viewed life, love, relationships and living. Get the tissues ready....

Options...no cures

Keith and I met with Dr. Michaelson yesterday. It was fantastic having Keith there with me...he had questions that I didn't really know the answers to, and it was nice to have him be able to speak with Dr. Michaelson directly about his concerns. And...we got to have lunch afterwards in Boston, very fun spending time with my darling son. I feel sorrow that he and Kristeen and Heather and Ralph have to be dealing with this, at the same time, I am so grateful for their encouragement and their caring ways.

We review the options for treatment...(1) do nothing, sit back and wait, and then start treatment when there is a resurgence, (2) start the standard treatment of "chemo", with the drugs Sutant and Torisel, or (3) go on the clinical trial with the drugs Sutant and Gemcitabine. We immediately knock out the option of waiting...then talk at length about the other two options. Dr. Michaelson admits his bias in wanting me to go on the clinical trial...he is running this clinical trial. He explains that clinical trials come and go, they help research as well as potentially helping the patient, that it is totally up to me. He gives us a baseball analogy that makes sense, that doing this clinical trial is like having an extra "at bat". That sounds right to us. He explains that the side effects have not been too bad for the patients currently participating in the trial, and that I will be watched carefully; that at any point, if there is a problem, I can be taken off the trial and put on the standard treatment. Keith has questions and Dr. M. spends close to an hour with us going over everything. He makes it clear that, whatever the decision is, it will not be a cure, that it will not make me feel better, in fact, will most likely make me feel not so good.

The obvious choice seems to us...to do the clinical trial. Once that decision is made, I say that I would like to start ASAP. I will have to do the testing again...CT scans, bloodwork, nuclear cardiology, bone scan. The medication will be 15 days on, then a week off, then starts again for another 15 days, a week off and so on. It will be pills, with the exception of Day 1 and Day 8 of each treatment cycle, when it will be by infusion at MGH. I ask that we start the testing immediately so that I can start the medication before I go on vacation....and maybe have that vacation week as the "no meds" week. Keith and I tell Dr. Michaelson that we just don't want the cancer to get a foothold---let's start right away....he puts his hand on my shoulder, looks me in the eye and gently says, "it already has a foothold....go on vacation and we'll start immediately after you return".

Slam! Reality! There it is again...sometimes I think I'm in denial about all this...and I know it's because I feel totally fine. I'm involved in my care, my diet, etc., and being focused on this helps keep the "dark side" at bay, so much so that I seem to be functioning pretty normally. Then I get the "slam", and reality hits. Of course, Dr. Michaelson is being truthful and real, and I so appreciate this and his kindness...it is what I want and expect. But, while I need to know the harsh realities of cancer (his job to tell me), I also need to have hope and believe that I can fight (my job) in every way I can to keep it dormant and prolong the harshness of this disease for as long as possible. And....I'm taking my job very seriously...

a busy week...

Wow, it's already been a week since I last wrote...have spent some time organizing my cabinets and finding jars for all the "new" stuff I'm putting into my system. Today, I'm actually going to cook some stuff to have on hand...it's been such a crazy week, that I haven't been able to do that as yet. I'm going to make some macaroni and cheese...vegan style. It doesn't have a bit of cheese or dairy in it and has gotten rave reviews online. It's called Mac-Oh, Geez...I just have to try it. Also, Beet and Carrot Salad, Millet Loaf, and Japanese Fried Rice. I want to have stuff available to take to work for lunches. I've been doing fine...have been having steamed veggies, fruits, and salads, but I need to take advantage of all that is available in "veganworld". It's quite amazing.



















This weekend I went to Vermont and spent the weekend with Keith, Kristeen and Maia. K&K were hard at work on throwing an informal garden wedding reception for their friends, Abe and Liz. It started at 4pm on Saturday, so it was a very busy day getting ready and setting up. Maia and I were the errand-girls...I took her to lunch at Healthy Living, where she ordered Kale ("I love Kale!" she said), brown rice, fresh green beans and tofu...wow, what an example she is for me! The party was wonderful...there was a local band who set up on their front porch (one of the band members is a guidance counselor at Kristeen's school), and Keith played his guitar with them for a couple of tunes...a very fun opportunity for him (and for us!) which he totally loved and he sounded fantastic!




















It was great fun. Lots of good food, and yes---there was plenty that I could eat. Three of the little girls at the party, including Maia, were the little "groupies". They danced the night away, so darn cute.

Keith got chatting with a guest the next morning, a friend of Abe's, and found out that his wife has a holistic/nutrition clinic in Litchfield, Connecticut. He is not involved with it, but still passed on some hints, for instance---I should be guzzling green tea as much as possible. I am going to get in touch with her, and we may go down for a weekend to meet with her...information is knowledge, knowledge is power....the more the better.

I'm seeing Dr. Michaelson, the oncologist, tomorrow. Keith is coming down from Vermont to be there also, I am really happy that he is coming...he has raised questions that need to be explored. He is better able to intellectualize this stuff and will be a great help in deciding the next step. I am leaning towards starting the clinical trial, but whichever route I take, I want to get started.

A plant-based diet...the vegan thing

I met with Chris Brown on Saturday morning for 3 hours...she was a wealth of information. I have been, since speaking on the phone with her about 3+ weeks ago, pretty much trying to do the vegan thing...and I've been pretty successful (with the exception of Italia), having given up meat, fowl, fish, and all dairy, trying to eat green, green, green, working on eating all totally plant based foods. I was able to "get through it", suddenly not having butter on veggies, having a milk substitute on my totally unsweetened oatmeal...it's been pretty sparse, but I did it, though food was tasting bland and boring, no longer a comfort and a joy.

Meeting with Chris totally opened my eyes to the incredible variety of plant based foods available. I was in Burlington, VT over the weekend and we shopped at an incredible store called "Healthy Living" (although, apparently the locals call it "Wealthy Living", since your wallet is pretty much emptied by the time you walk out the door, with very few bags, but a hefty receipt); and started shopping for some of the things that Chris recommended. Today, I continued at Whole Foods, this time with a list put together from her suggestions and recipes. Peg and I were there for two hours, locating things we'd never heard of and didn't really even know their category...it was kind of like shopping when you've moved into your first apartment--starting from scratch. Got home and started cleaning out the cabinets, which I'd done a few weeks ago, giving away and tossing some stuff, but now I'm serious. Pretty much everything that is not vegan, plant based, healthy....is gone. My kitchen is pretty much a disaster at the moment, but this too shall pass.

The diet that Chris suggested for me is vegan--totally plant based, but also based on the fact that I have kidney cancer, so may not necessarily make sense to you if you don't have that culprit in your life. I am totally on board with her recommendations and am off and running. A few of her suggestions: flaxseed oil and flaxseeds every day, at least one brazil nut every day, miso soup or tea every day, greens at every meal, including breakfast, trying to balance alkaline and acidic, leaning much more heavily toward the alkaline, no peanut butter, no raw mushrooms or raw broccoli...those are just a few of her recommendations. It will be a bit of a challenge to incorporate all of these, but this is the route I'm going to follow. Chris showed me enough variety to make it interesting and delicious and therefore, sustainable...

It feels a bit daunting and I can't help but wonder if it's too late to make all of these changes...but I'm going for it anyway. It feels pretty weird that through the years, so many times I've tried different diets, mostly for weight control, and haven't really been able to be successful, just haven't have the stamina, the commitment, the perseverence to make it work...and have failed most times, to meet my goal. This time...it just feels different--almost as if I've "flipped a switch" and will be able to do this without a lot of fuss. Weight control seems unimportant now, life is taking me down a road that I'd rather not travel...it feels that making this change in my lifestyle is not really a choice, but a change that may prolong my life...a worthwhile endeavor for me to undertake. Wish me luck...

Sunrise in Plymouth...

It's Friday morning, the sun is shining, the air feels crisp...I was up at 5am...restless. I put on my robe and went out on the porch, huddled under my Red Sox quilt and watched the sun come up over the harbor. The colors and the light were so beautiful...just an awesome time of day to soak it all in. Spent a little time feeling sorry for myself (again), read for awhile, and now am getting on with the new day...feeling better, and once again, grateful for this little spot in the world.

Home from Italy....back to reality...

What a fun and fantastic trip we had...it felt as if we lived and were actual residents of Florence while we were there. Lots of great food in little cafes tucked away or right out in the midst of Italian life. It didn't matter, it was all great for relaxing, conversing, people-gazing and all that fun stuff. We did side trips to Rome, Venice and Siena, walking until we thought our feet would fall off. It's hard to believe that one week ago today, we were standing in the Vatican.

Now it's back to reality. I'm seeing Chris Brown, the nutritionist, on Saturday morning. I did not stay vegan in Italy, but I'm totally back on track now. I believe she is going to put me on a highly alkaline diet...I've done a little research on that and wow, the acidic list is full of the things I seem to like....oh well....I'll wait to see what she comes up with. I definitely need some direction from someone knowledgeable.

I have had a persistant ache on my right side for the past 2-3 days...I think it's just muscular, from sleeping wrong or something, but it's peculiar how every little thing now becomes a slight concern--before this diagnosis I might not have given it a thought. I really don't like being afraid of the little aches and pains, but my perspective is just different now, not in a good way. There is fear of the unknown, not that any of us has a crystal ball of what the future holds, but with cancer, I do know that the unknown is, most likely, not going to be rosy. I guess I'll take some aspirin for now...

Independence Day....2008

Greetings again from Italia....spent the day in yesterday in Rome, we are very proud of ourselves for being able to get ourselves around from point A to point B.....we are good. Spent a lot of time at the Vatican and the Sistine Chapel, went to the Roman Forum and the Colosseum, traveled around the city on a tour bus and experienced Roma. Another very hot day, this traveling is exhausting....I may be older than my sisters, but they're having to keep up with me, not the other way around! Tomorrow we are off to Venice, taking the early train and coming back in the evening. We're in Italy....we have to experience Venice.....Italy is wonderful, but today is the 4th of July....we are all dressed in red, white and blue and remembering where we are from....

Buongiorno from Italia....

Arrived in Florence at 2:05pm on Sunday, June 29th as promised....without Brenda and Carole's lugguage, C's arrived on Monday, B's on Tuesday. I lucked out, only had a carry-on. Katie met us at the airport and we bused it to our hotel, which is 94 steps up to the attic...we actually quite love it, although it's a bit warm...they frown on keeping the AC on (which is quite meager to begin with) during the day if you are not there....wasteful Americanos. We have walked at least 75 miles per day (well, maybe not quite that many) and are having a blast. Are partaking of life in Florence. Have been to the Uffizi Gallery, the PonteVechio, the Duoma, St. Lorenzo Marketplace, Boboli Gardens, outdoor concerts, many great cafes, many great conversations. Yesterday we went to Siena, the day before the Palio, and it was the best....great scenes, sights, smells and sounds.....tomorrow we are off to Rome, off to the Tuscan countryside on Friday and Venice on Saturday. Hopefully San Gemeniano on Sunday. We are having the best time. Did I say that it is 100+ degrees here? Even at night, as I sit writing this, the sweat is pouring down my face. It is 10:15pm, the heat is relentless. Katie is great, doing fantastic with her Italian, loving it here in Florence, although her program is a disappointment that we're collectively working on....all right, off to the shower, if you can call it that....barely able to fit a leg in....and it floods all over the place....well, the room was a "bargain". Keith, Heather, no phone service here for my phone, and Brenda's has "burned" out, can't charge it. Hope all is well!