a beautiful day in New England...

It's Sunday, a spectacularly beautiful day here in the East...it reached 70 degrees today, simply incredible. It was very windy here last night, and driving up Route 3 today, it was quite noticeable how "naked" the trees are becoming. In another week or two, there will be few leaves remaining intact on the trees. But the winter, the bare trees, and of course, the snow...have their own beauty and it's fun to start the "hunkering down" process. I removed Spring, Summer and Fall from the porch today, and readied it for the cold that is on its way to beautiful New England.

Some folks were distressed at my last post, the portion that talked about my diagnosis, prognosis and potential outcomes that the doctors have given me. Let me just say this....I am so optomistic about my situation, that I have to actually remind myself at times (the slam) what the reality is....that is not to say that I'm planning on that reality...but I cannot completely ignore it...that would be setting myself up for a huge fall, depending on where this goes. So, with that said, believe me, while my boat gets rocked occasionally, I do not and will not spend my days or nights dwelling on this. My life feels pretty normal and joyful, as always.

On Thursday, at work, I was freezing--had the heat turned up, coat on, couldn't get warm. I thought I had a fever again, but I did not. I decided that it was a symptom of the low iron, so I shopped for some high iron foods and went about my business. On Friday, I did not go to work--I was just truly fatigued and ended up sleeping away most of the day. Heather came down on Friday night and stayed over, I put streaks in her hair, and everything I did seemed like a huge chore...just no energy. On Saturday morning, we got up and out the door around 8:30, after having had a good breakfast, again trying to fight the fatigue with fuel. We went to Kohl's and while we were in the dressing room, I actually had to lay down on the floor because I thought I was going to pass out. Yikes, it was like I was just completely out of gas. Poor Heather, she's trying on clothes and I'm laying on the floor telling her not to worry, it's just the medicine. And it is---the gemcitabine is definitely working on me--b r i n g-i t-o n.....but is making me have these few problems. I soon recovered and we were on our way. Went to a baby shower in the afternoon and a movie at night with Carole--"The Secret Life of Bees"...loved the book, loved the movie. Another slight problem is the taste in my mouth---metallic I guess, seems to get worse with each round of meds. It definitely effects the taste of food. But these issues are pretty insignificant in comparison to the "knock 'em dead" chemo that many patients have to endure. So...I am not complaining, just explaining what's happening. Other than a few bumps in the road, really small bumps, I'm doing really, really great.

Woo Hoo--Houston we have shrinkage.....

OK, went to MGH yesterday to start Round 4 of the clinical trial, but more importantly to get the results of the CT scan that I had last week. Kara, the RNP came right out into the waiting room to get me (it's always been the tech to the the vitals first), and Kara said that she'd been anxiously waiting for my arrival---that it was really good news. We sat at her computer in the exam room and she brought up the result, which showed that out of the 6 nodes that they are watching and measuring, one in my neck had totally disappeared, the other one got significantly smaller. The 4 in my abdomen also all shrunk significantly, some more than others, but the report says that all lesions are decreasing in size, with no new lesions. I think Kara was even more excited than I...she was so delighted to be giving me good news. She read an email to me that she received from Dr. Michaelson, who was at a conference (learning more about how to combat this disease, hopefully!), and he said to tell me that this is very good news and that I'm off to a great start. That felt great to hear that from the "big guy", as they call him in there, (tallish, but very thin), but huge in knowledge, treatment and compassion.

Kara gave me copies of a summary of everything that has gone on to take to my new PCP today, a copy of the measurements of the nodes from last time to this time, and a copy of my bloodwork...I am bordering on being anemic--if it goes much lower, I'll have to be treated. She couldn't believe I'd climbed Snake Mountain on Sunday with Keith, Kristeen and Maia..... Anyway, I was reading the summary while she went out for my new meds, and at the end of the summary it said, "She understands that this (biopsy of lymph nodes) represents incurable metastatic disease, which is likely to progress to life threatening complications. The sarcomatoid histology is suggestive of a potentially aggressive disease course."

Well, there is the big slam again....I have metastatic renal cell carcinoma, lest I forget. While I am thrilled that the nodes/lesions are getting smaller---I have to continue on the course of staying battle ready and I need to up the training. Now is no time to be a slacker. This disease is not for sissies, and I don't plan on being one....

Ok, enough for now--I'm off to see my new PCP.

CT scan...

OK, round 3 is done and I'm on my off week....no drugs, hallelujah. Not that I'm not extremely grateful for the drugs....I just know that are doing not all good things to me--I just hope they're working on the culprit.

I went for a CT scan yesterday. It was uneventful, but now the waiting begins, which is the difficult part. I'm very hopeful, and am trying to stay totally positive, but at the same time, every eventuality is running through my brain---of what the result of the CT scan might show. I feel that I have to do that and cover every result, good or bad, that I might be given-- in order to prepare myself and not be blindsided by the news.

So....it's a slippery slope that I'm walking right now, keep up the good thoughts, prayer, karma....
I'm seeing Michaelson on Tuesday....I'll let you know....

it gives and it takes, but the gives are winning....

Well, on Saturday, October 12th, it will be 7 months from when I had my surgery....it's hard to believe that it's been that long....As I think back over these past months, as I can't help but do---it makes me realize that, while there have certainly been challenges (most that I have not even met yet, and hopefully will not have to be put to that test), but more importantly are the subtle changes that having this culprit lurking in the periphery, bring about. I think back to the days when I couldn't stop crying--I hardly ever cry, but receiving the Stage 4 diagnosis was...difficult. For days and weeks after that, I would easily get weepy, but finally pulled myself together and have moved on. Of course, tears are healing, needed and helpful, but I don't like trying to function in that mode, and it makes it nearly impossible to stay hopeful and optimistic, so I go there rarely, get over it and move on. For me, that is what works.

I was at MGH yesterday for infusion day, and there was a gal there that I had seen in the opposite bed/lounger last week. She was having an infusion also, but into a port that had been inserted into her chest. Yesterday, she came in to the waiting room at MGH, without her wig, wearing a pink shirt and pink Red Sox cap over her bald head. She was weepy and emotional, saying that it was her last infusion day....she was so excited to move on. Hopefully, this chapter of her life is done, but the chapters to come will, most likely, be enriched for what she has been through.

Keith told me months ago that living with this was not going to be all bad--that it would alter my life in many incredible ways--and he is so right---how did he get so smart, sensitive and introspective? As I have been forced to deal with this, I have found that I actually can make a commitment and stick to it, that I have have dug down and found more optomism and hope hidden away than I thought was possible, that I have the energy to research this stuff and make intelligent decisions (hopefully), that I am able, most of the time, to not feel sorry for myself--most everyone I come in contact with most likely has serious life issues, many worse than mine, so I haven't wasted time asking "why me". Well it is me, and I have to go forward, not back. "Go Forward"---I've worn this Superman dogtag for years now, from way before this happened. It is from the Christopher Reeve Foundation. I starting wearing it because I so admired the way they lived their lives in the face of such adversity...with such grace and humility. I still wear it--it reminds me every day to.....go forward...that this culprit is what it is, and I have to deal. If I can emulate them even a little bit, in the way they lived, I will consider it a victory.

Cancer can't take away my spirit, it can't take away my hope, my joy and happiness or my laughter---unless I let it, and that's not in the plan. (Someone please remind me of this if the going gets tough). Up to this point, it has given more than taken away....it has given me a wake-up call. It has made me stronger, it has made me sit up and take notice of the small things that I had been taking advantage of, it has made me really feel and be aware of the love and support from my family and friends and has made me feel so grateful and thankful for it all, it has made me realize that....well, that I have a l-o-n-g way to go, many things to work on, and there's a lot of life to be lived. I won't list these things, as I have written a novel as usual. This was going to be a short post....whoever knew I was so bloody wordy!

Confessions....

Before I get to that.....I was in NY again this past weekend. I haven't been in NY for years, and now two weeks in a row. My niece, Katie (the gal that just spent 10 weeks in Italy), landed a job in the fashion industry on Seventh Avenue and started her job on Monday. On Sunday afternoon, we were moving her into her apartment in Brooklyn! YIKES. She is sharing it with two guys--they were great...they've been friends since they were 7 years old and they grew up in Brooklyn. They work in Manhattan also, do not own cars, and really know the neighborhood. We left at 9:30am and got home around 9pm. It took about the same amount of time that it takes me to drive to Burlington VT to see K, K and M, but the drive to NY is not nearly as easy or as scenic...Route 89 to Vermont is just a great ride, the scenery is spectactular, the road is usually quite empty, and of course, the final destination is always the best! The drive to NY???? Well, not so good, although Connecticut is nice, but gets dicey in places, then you hit NY and the scenery becomes not so nice. NY is a beautiful state, no doubt...we just were not in those beautiful areas. We were headed to Brooklyn and went by Shea Stadium where they were playing their last game of the season...and lost. And the weekend before, we had gone by Yankee Stadium, where they were also in their last weekend of play---both stadiums were being torn down after those weekends....weird.

Started my 3rd round of the clinical trial yesterday...it was uneventful pretty much. And I slept pretty well last night, which I don't usually do on infusion day. My bloodwork was excellent with no decline in my WBC. I saw Kara, the RNP and the clinical trial gal, Carol. I went into more detail about my diet. They ended up being supportive and saying to go for it, but didn't see any reason why I shouldn't have mac' an cheese if I felt like it now and again. They seemed to be more concerned that I'm enjoying what I'm eating (which made me a little nervous)...than what I'm putting into the body. Western medicine.....geesh! However, they were very supportive and we all agreed that it was a good thing, certainly was not going to hurt anything---well, of course not! I realize that I'm not a total vegan---my holistic oncologist told me that I should eat a few eggs a week, so, I am making allowances--a true vegan does not eat eggs. My thought process certainly has to be that this diet is helping me...that is what is keeping me on this track. I have to look at this positively and picture that the good stuff going in is what will keep the bad stuff from multiplying. I picture it as PacMan (dating myself) as the good food, is eating up all the bad cells. Simple, naive..maybe, postitive...always.

Ok, back to the confessions. I haven't been walking regularly, jumping on the trampoline, or doing weights and I also haven't signed up for yoga (guilt). I said I was going to do all these things and I did for a week or so well, not yoga, then....I don't know, life happens. I really should be able to do these things without letting other things in the way. But, alas, I just can't seem to get those endorphins in place when I need them...which is before I start! Well, maybe my plan was just too ambitious to start with (excuse). If I can do something 3 days a week, that would be more doable and practical....the good news is (there always has to be good news) that I have been doing my green smoothie and taking some vitamins. I purchased a heavy duty blender, BlendTec....(it can blend up a cell phone), and I am having a green smoothie every day. It's a bit time consuming, but I make enough for 2 days, each about 30-32 oz. They include kale, bok choy, parsley, cucumber, collard greens and whatever fruit I have on hand--banana, apple, blueberries, strawberries, nectarine...the fruit makes it edible....yes, you actually have to "eat" it, by moving it around in your mouth in order for the siliva to play its important part in digestion. So, takes awhile to get down. I also add a 1/2 cup of ground flaxseeds and 2 tbsps of green veggie powder. I figure I'm getting about 15 servings of veggies and fruits a day from this. That can't be bad. Notice I'm spending more time on the things I AM doing than the things I'm NOT doing!

So, I'm trying to get my head back in the right place again. Maybe I should work with a professional trainer, or even better....a life coach that could work on my head as well!