Defrosting Hope

After four and three-quarter years of dealing with melanoma, I've finally decided to blog. Many of you have asked me to document my journey. Now as my family, friends, and I face a new health challenge, this blog will hopefully keep us all in touch. Please know however that it is just as important to me to celebrate joys in this blog. Don't hesitate to share what is going on with you and your loved ones. I want to be kept in your loop too.

On October 28th I had an elevated LDH that warned of increased tissue destruction, which then led to a series of scans. The scans indicated that while I had even more tumor regression in my liver, there were new lesions in the spleen, abdominal wall and upper left buttock. The real challenge, however, was the two lesions found between my eyes and behind my nose.

So what does one do with those scan results, after being released twenty-two months ago from the National Cancer Institute's Melanoma Clinic with six to twelve months to live, but can still hike with girlfriends for two hours? First you listen carefully when your local oncologist and palliative care docs tell you that you are strong enough to fight because these are the gals you've entrusted to guard your quality of life. Next, you dust off your research chair, sit down in front of the computer, and don't rise until you find legit options. Lastly, you cautiously but with complete determination tell your family that the game has in fact changed. You have just lived long enough for there to be viable melanoma treatment options that could keep you alive for the next two years. And two years is now what the research community says they need to come out with the first approved cocktails. You then cautiously explain to your sixteen year old daughter, eighteen year old son, and seventy five year old mother that there are no guarantees but hope is back on the table.

What happened next had to do with getting stars in alignment. Suffice it to say through some hard work amazing new resources emerged right here in Chicago. I will detail how that happened in a later blog entry.

My new melanoma oncologist is Dr. Howard Kaufman. He is also the new Director of Cancer Programs at RUSH Medical University in Chicago. Dr. Kaufman believed the brain lesions needed to be handled quickly so that a strategy can be implemented in January that takes advantage of my response to immunotherapy and chemotherapy. The surgery was also necessary if I want to be eligible to participate in clinical trials again. My advocate team which now includes not only my husband, Masuo and Karen Hirsch, but also Debbie Hepburn, and Sharon Mann, and I agreed with Dr. Kaufman. So on Tuesday, December 15th, less than a week after meeting Dr. K, my phenomenal advocates played tag team at RUSH supporting me through outpatient radio surgery led by Dr. Ross Abrams and Dr. Luis Munoz.

Now this is the really cool part so pay attention bkz it is one of the best teachable moments I know for convincing kids that trigonometry and physics have real world applications. I had two physicists, a neurosurgeon, a radiologist, two residents, three radiology technicians, and a head radiology nurse working first on a simulation of the brain so that they could make the correct arcs for the concentrated radiation beams, and then on the actual delivery. It was a real tangible example of how physics and trigonometry are used in medicine. They used Stereotactic Radiosurgery (SRS) which is a high precision non-invasive procedure that uses highly focused x-rays delivered through multiple fixed beams or rotating arcs, to treat certain types of tumors. The radiation beam is produced by a linear accelerator and is collimated to create custom shaped beams directed towards the tumor. Of course, the crown they screw into your skull and leave you in for nine hours borders on archaic, but the rest of the procedure is really cool science. Luckily, as you can see I have docs who like lots of questions. FYI, if any of your kids see me on the street tell them no Bride of Frankenstein jokes until after Mrs. Ishida gets out of earshot.

So as 2009 winds down, I am still here and able to be amazed and humbled by a courageous family, incredible friends, dedicated medical professionals, and to borrow a phrase "the audacity of hope". That said, I know these are very difficult times for many. It is truly my hope that we all share in the audacity. There is enough to go around.

In gratitude,
Susan