Wednesday, April 29, 2009

The Time Has Come...

We just got back from Boston (2AM Wednesday morning...) as our appointments/meeting with the doctors all went a lot longer than we thought, but it was a GREAT day as once again the news from my latest scans and tests was very positive. I had a cardiac MRI (this one only took 90 minutes...I felt blessed) and a full body PET/CT scan and both brought good news. My primary tumor continues to shrink as it's roughly 25% of the size that it was in October and it's shrunk again since January. The PET/CT scan shows no new lesions or tumors in my organs or bones and the other metastasis' remain the same.

Now for the big news that almost ensures my blood pressure will be high for the next 3-4 weeks. I will be getting two more doses of chemotherapy (5/1 and 5/8) and then it's time for the surgery I have been anxiously awaiting (and dreading) since October 13th. I don't have an exact date yet (we expect that by Friday) but it will be very close to Memorial day. I will have chemo on May 8th and must wait 10-14 days after that treatment for surgery so it will fall in that window. I will use my next blog post to update you on why Dr. Butrynksi is recommending we stop chemo (temporarily) for surgery, as this obviously comes with some risk. I have to admit that I was surprised as I completely expected to be coming home for another cycle (12 treatments) of chemo.

We actually spent a lot of time with the surgeon today (Dr. Shakar). Just talking to him about the surgery eases some of the anxiety as he is very knowledgeable and confident. Lucky me, I actually get two surgeries at the same time. The main surgery involves resecting the tumor from my heart and rebuilding my right atrium. They will also remove any scar tissue that exists as a result of the shrinking tumor. To rebuild the atrium they will either take a piece of my pericardium (the sac around my heart) or use a piece of either a pig or cow heart (cool!). This depends on how much of my atrium they have to remove, and they won't know that for sure until they get in there.

The second thing they are doing is addressing the cancer that's attacking (or past tense attacked...hopefully!) my sternum. I was surprised to learn today that they are going to actually remove my entire manubrium, which is the large bone at the top of the sternum that anchors the collar bones and top two ribs. They will have to stabilize my collar bones with a plate and won't need to re-attach those two ribs to anything. I was told this will leave a big depression (dip) in my upper chest as the plate will only be used to stabilize the collar bones and won't cover the entire area.

The surgery itself will take from 4-6 hours and I will be put on the "Heart and Lung Machine" while they work on my heart. We were told that I would be in the Intensive Care Unit for 1.5 days after surgery and then at the hospital for 6 days after so it looks like I could be in the hospital for up to 8 days. There is a chance I will need a pacemaker immediately, and if that's the case it will be done a few days after surgery, and may extend my stay by a day or two. I was told that I would be "out of commission" for 6-8 weeks which doesn't seem bad considering the type of surgery. I am positive I will be on the low end of that and plan on being back on my feet much sooner...

So, there's that...the day I have been waiting for since getting diagnosed is less than a month away. As I learn more about the surgery and what I should expect, I will keep updating (if people keep reading!). Thanks Shana, Mom, Dad, Matt, Liz, Joan and Michelle for coming to Boston with between all the tests, injections and appointments, we all found some time to have fun. We went to the Yankee/Red Sox game on Sunday night...all of us decked out in our Yankee gear (except Shana with her Sox stuff) and we were actually treated pretty well (maybe the felt bad for us with the sweep and all...). Check back over the weekend!!

Friday, April 17, 2009

Finished Round Four!!

I completed my fourth round of chemo today and as of right now I have no more treatments scheduled, which is kind of a cool feeling (that will change on 4/28). This was my 24th treatment (we consider six treatments a "round" since I have to take a week off every six treatments) and I still feel good, overall. We went to Myrtle Beach this week and had a great time….just basically relaxed on the beach/balcony and ate a lot and had a much needed rest, away from all the troubles back home (ok…only one trouble, the cancer). It was really great to get away for a few days and have nothing to worry about other than where to get "all you can eat" crab legs.

We're off to Boston next week as I will get another heart MRI (almost two hours in the MRI coffin, I need two Xanax for that), a full body PET/CT scan and talk to Dr. Butrynksi and Dr. Shakar (my oncologist and surgeon respectively). Everyone in my family has been trying to "guess" what will be next…another 6 or 12 weeks of chemotherapy or my surgery and I honestly can't decide what to hope for, so I will just hope for clean scans. I am thinking that if they opt for surgery it will happen that week, so that's kind of scary.

Since there is a good chance they will order another round or two of treatment I have to start thinking about some other things. We have begun to do some research on the long term effects of Taxol, and if it continues to work as well as it is, who knows how long I will be on it (could literally be years, I guess). Eventually, we are told, I will need bone marrow transplants as the Taxol will cause my bone marrow to stop producing blood cells. This can be problematic for long term chemotherapy patients (which I will be happy to be if that's what it takes!) and we are going to start looking into "harvesting" of my bone marrow for future transplant. People in my family can also get tested for compatibility, in case I ever need it from others. It doesn't hurt to be prepared, right?

Also, since I have been diagnosed, I have been given a bunch of books on cancer and survival. I've spent the last six months researching my specific cancer, treatment options, case studies, etc that I really haven't had time to read them, and I have decided that if I am going to continue on this road I have to start paying attention to what most of these books say. As we all know, there are many factors that will impact the outcome of this cancer…for six months I have been getting by on excellent medical care and an excellent attitude, both of which are extremely important and will go a long way in my survival. I also know that my general health is VERY important in my bodies ability to fight and handle treatment. I have to start focusing on my diet and exercise and how I can use those to my advantage. There are hundreds of books written on "cancer diets" and what foods and nutrients have been proven to help fight cancer cells and maintain a healthy immune system. I have gained 30+ pounds since this ordeal started (and I love blaming it on the steroids I am on) and I have to focus on getting that weight off (and then some!). So we are going to start paying more attention to that. I have been given 10 different books on this topic (or other topics including faith/religion, attitude, etc) and I am going to read them all over the next couple of months, including a couple others I have found. The bottom line is, I need a better "plan" that addresses every aspect of my life that can impact the outcome of this…whether that outcome is good or bad, I know I can impact it and I have to do everything I can…once again, it's all about what I can control and I know there are some things I have been ignoring.

I want to thank everyone who continues to support me. I feel great about reaching the six-month anniversary of my diagnosis (that was April 12th) and I know I couldn’t have done it without all my family and friends. Shana and I are so filled with gratitude and I feel very confident when I say that I don't think I would be where I am right now (winning) without ALL the support we have received. We have some amazing people in our lives, hundreds of them, and I want you all to know how much it and you mean to me. I love all the comments on the blog, the emails, the texts, the cards, the calls…it doesn’t seem to stop and the encouragement and concern of everyone means the world to me. Also, the Heart Walk is tomorrow and THANKS so much to everyone who contributed to help us reach (and exceed) our goal. I have sent some thank-yous and have some more to write…but thanks, thanks, thanks!

Saturday, April 4, 2009

Radiation & Other Stuff

I have had seventeen radiation treatments so far and I am sure it won't come as a surprise to many that I can't wait until they are finished. As I have been told, the radiation has had many side-effects, including fatigue and pain/discomfort. The fatigue is so bad some days that I wake up after a full nights sleep feeling like I got none at all. I tolerate the fatigue pretty well, with the help of coffee, and it doesn’t bother me that much. The worst part is the pain in my throat/chest. Since they are treating my upper spine with radiation, I am getting a dose that goes in through the front of my chest and this causes short term damage to the esophagus. Swallowing certain types of foods causes a discomfort in my entire chest that is difficult to describe, but I hate it (really takes the fun out of eating!). The medication they put me on for it doesn't seem to work, so I just have to tuff it out I guess. It should only last 7-10 days after the treatment stops. All in all, I had 14 treatments on my rib (they are done with) and I have three more to go on my spine and then I am done with radiation, hopefully for good (fingers crossed!). I ended up hurting my back (don't know how) in March and when I showed up for radiation crippled and unable to get off the table under my own power they immediately sent me to see a doctor who ordered an MRI of my lower spine for the next day. I was sure it was just a muscle and it ended up being a disc injury, but it's funny how quickly they act when you have cancer and a new pain. It lasted about 10 days.

I am proud to say that through a month of daily radiation and weekly chemotherapy I haven't missed a day of work and continue to just push forward. I am convinced that the key to beating this cancer is to stand up to it by living my life as if I wasn’t sick and I think it's working. That combined with very talented doctors, lots of prayers and the love and support of my family and friends is exactly what's got me this far. I tell myself that every day and I firmly believe it.

April is a very important month. First, on 4/12, it will be six months since my diagnosis. This is an important milestone for me, personally, as much of the research I have done on cardiac angiosarcoma seems to point to five or six months as the average survival time after diagnosis (other studies won't give an average since it's so rare). Of course, there are so many variables that can impact that (and those statistics) that we've learned to take them with a grain of salt. Each case is very individual and so far everything, with a few minor exceptions, has gone my way so far. Another reason April is significant is that at the end of the month I will have complete follow-up scans, and meet with my oncologist in Boston to find out what's next. The options should be another 12 weekly chemo treatments or open-heart surgery. I'm not sure what to wish for this time…so I will just hope for clean scans and more shrinkage of the tumor and let the doctor decide the next steps.