I spent all day yesterday at doctors. As you may remember from my last post, Dr. J believes that the Myeloma is now in a “sanctuary” site which means that it is only present in one place in my body. This is the reason that the blood markers were unchanged after the stem cell transplant. His belief is that if we radiate that one particular area (in my left hip) and shrink the tumor – we can retake the blood markers and I should be in remission **fingers crossed here**
Yesterday morning I had a biopsy of the hip area to confirm that the activity on the PET-CT scan was indeed Myeloma. The results of that will be back in a few days but Dr. J is pretty certain of this. Basically they use a CT machine to make sure they are taking tissue from the right area and then use a needle to extract the tissue from the bone marrow. It is just a more intense version of the bone marrow biopsy I had two weeks ago.
After the hip biopsy (actually it was a biopsy of my Iliac bone and my Ischium bone) I had lunch with my great brother and then headed to the next doctor – Dr. B – who will perform the radiation. I spent another hour in a CT machine so that they could make a mold of my body and mark the areas they will radiate. It is actually pretty cool. The plan is 10 straight days of radiation starting on 5/13. In order to make sure they have the right area, they take pictures with the CT machine and then mark my body with three tattoos. I guess now I can’t be buried in a Jewish cemetery? Actually the tattoos are just small marks where they will point the radiation lasers. After taking the pictures, they meet with physicists and map the exact coordinates for the radiation beams. The radiation is very low dose and I should feel limited side effects if any. I booked the first available appointment each day (7:45 AM) so I can get to work afterwards. It should only take about 15-20 minutes per day.
It was a long day. The biopsy nurse was actually surprised when I told her I had another appointment with another doctor that day. She said most patients like to go home and rest – but – no rest for the weary yesterday. No time to rest when you are fighting Cancer. Cancer doesn’t rest so neither will I.
Two doctors appointments, one biopsy, two CT machines later, Helene met me in the city and we went to the MMRF (Multiple Myeloma Research Foundation) Laugh for Life Fundraiser. It was a great evening with fellow patients, doctors, donors and philanthropists. It was an amazing evening for me in that I got to meet other Myeloma patients – some that I have had interaction with through Twitter or Facebook. I couldn’t believe that some of my “Myeloma heroes” were there including Cindy Chmielewski (@myelomateacher) who is a great patient advocate and so well versed in the disease.
Bill McHugh (@promotingGHL) was also there. Bill writes a great blog called Promoting Global Hair Loss. He ran up the Empire State Building this past February to raise money for the MMRF. At dinner, Helene and I sat next to a couple, The Brophys, that have a golf outing the same day as mine! My friend Adam from Celgene was there as well as a number of prominent doctors (including Dr. J) and their staff. By the way – Dr. J did not go running when I approached him to say hello. I promised him that I didn’t have any medical questions for him!
The evening was special. In addition to the comedy (hence “Laugh for Life”) headliner Susie Essman from Curb Your Enthusiasm, (WARNING – VIDEO LINK IS NSFW) there were inspirational moments and speeches from a 13 year old girl who raised $7500 hosting a soccer event for her Bat Mitzvah project to the wife of a patient who spoke about how her family deals with the diagnosis and the hope for an eventual CURE. That was the key to the evening. That word – CURE – was spoken over and over again. Myeloma patients are very fortunate that organizations like the MMRF exist to raise money and advance research toward that elusive CURE! It was amazing to see the donations pouring in during the live auction and the cash call. I am so appreciative to the MMRF for all they do to advance the CURE.
If you can be proud to have a disease – if that is at all possible – I am proud to be associated with people like this. A community of caring patients and providers – all advocates of a CURE.
On to the next step…radiation begins. Time to get rid of the beast!