It Is Not a Matter of If, But When


After attending Dr. Goy’s MCL Symposium this past November,  I walked away with the following impressions:
  • For one thing it seemed that I heard that it is not a matter of if, but when my Mantle Cell Lymphoma will come out of remission. 
  • The other was that when it happens there are plenty of real cool drugs available that will be available to me. Bottom line, no matter what I will be fine. It is fantastic to know of all of the incredible medical advancements that have been made with this disease. BUT… I will say it would be awesome to never need to test out just how great they are.
Personally, I am feeling great. I even started Weight Watchers this past April and have dropped about 25 lbs. I plan to continue watching what I eat. My next challenge will be to exercise more.

6/11/12 – I went for my CT scans today. With a change to how CT scans are handled at Hackensack University Medical Center, we now have to show up a couple of hours early to drink our Readi-Cat2 Barium Sulfate Suspension Smoothie (something I kindly refer to as “sludge”). We used to be able to drink this starting the night before and finish it the morning of our scans. I think there was a challenge getting all the patients to follow the directions and drink it at the necessary times, so now we have to drink it when we get there. This does present an opportunity for everyone waiting for their scans to have some very interesting conversations on just how awful it tastes no matter what flavor they put in it. I actually very much enjoyed the time I spent in the Waiting Room with my fellow sludge drinkers. You would think that after how many times I have had to drink this that I would be used to the taste but I am not sure that will ever happen.
6/15/12 – I met with Dr. Mateo today (Dr. Goy was on Vacation, I guess he is allowed). With me feeling so well I fully expect this day to go well. Unfortunately, the results were not exactly what I was hoping for. Dr. Mateo stressed that there was nothing to get too worried about. The Radiology Consultation Report said the following: “There is a mild increased soft tissue density within the right pulmonary hilum, findings mildly more prominent when compared with prior scans of 6/13/11 and 12/12/11. If further assessment at this time is warranted, I would recommend correlation with a PET scan.
Based on this Dr. Mateo would like me to wait a couple of months and then have a PET scan. I am now scheduled for a PET scan on August 13thwith a follow up appointment with Dr. Goy on August 20th.
On a real cool note, The Cancer Center has asked me to perform at their annual event called “Celebrating Life and Liberty” held Liberty State Park at the end of September. For those of you who do not know me, I love playing guitar and singing. This will be a lot of fun for me. I just have to come up with some songs that will fit the event well. If anyone has any suggestions, please pass them on to me.
Exodus 15:2 The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father’s God, and I will exalt him.

With my next scan is scheduled for August 13th and my follow-up appointment with Dr. Goy being on August 20th, my next update will be around August 20th.

More to come...

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