Good evening, and a very happy Sunday to all of you. I’ve been absent. I know. I cannot tell you how much the messages mean to me/us even though I was silentfor a time. We cannot thank you for always caring no matter the circumstances. We are loved by, prayed for, and cared for by so many. You never let us forget this fact.
For some unknown reason, I took an unplanned respite from Facebook. For this, I am very sorry as I realized I haven’t updated since Gammaknife besides the picture of me driving post procedure. As evident of me writing this message, I am alive and well, or as well as can be considering the wrenches that life keeps throwing my way!
For those that just want the quick and dirty, everything is okay with us. There were no complications with the lumbar puncture or the gammaknife procedure. Furthermore, the pathology for the lumbar puncture (which tests your cerebral spinal fluid) came back negative for disease which is great news! I never suspected anything within the CSF, but it’s always a great feeling to have a test come back negative and unremarkable. Lastly, my blood work is continuously showing improvement in my kidneys. I have stopped all NSAID medications as well as getting PET scans without the nephrotoxic contrasting agents that have been believed to be damaging my kidneys. We are taking out both of those factors (NSAIDs and contrast) to see if I get improvement in my kidney numbers.
For now, we wait until the first follow-up MRI which is scheduled for January 26 at MD Anderson with consults with Dr. Li and Dr. Lang on January 27. Furthermore, tomorrow we are beginning our 2016 edition of kicking cancer’s butt with our very first PET scan of the year, January 18 at my local hospital. Please pray for our very first of MANY clear scans and please pray for answers to my current and ongoing lower back/leg pain which has been on and off since August.
As for the day of Gammaknife, some of you may remember the last post I made prior to getting treatment was confusion as to why this procedure was scheduled to take 55 minutes. The lesions that were known to me were small, and there were “only” three of them. My very first gammaknife was 17 minutes long and treated a single lesion that was bigger than all of those in question this time. My third gammaknife was around 45 minutes long and treated two lesions, one of which grew to a 3cm lesion. My second gammaknife was somewhere in-between those timeframes. With that said, I could not fathom why this procedure was going to take the longest. The only reasons known to me were number of lesions, size, and complexity. My mind decided to concentrate on number of lesions and size. To make matters worse, when I asked the nurse how many lesions were being treated, she said Dr. Li wanted to speak to me first. Good grief! That isn’t what any patient wants to hear, especially moments away from surgery!
It was a very long wheelchair ride (they make me despite all efforts to showcase my walking skills) down to the gammaknife suite as my mind went every which way. As Dr. Li came in the room, she didn’t waste any time. She said the radiologist remarked upon quite a few spots. I asked how many, and she said many. She quickly went into what the plan was. I’m a visual person so she took us to the computer to view the images together. She said Dr. Lang and herself went through each remarked upon spot and each image to discuss/debunk any and all that they could. Many were artifact findings (anomalies) and some were ultimately determined to be blood vessels. It is my belief that the machine was an older MRI machine because the quality of the sequence we looked at resembled what seemed to be an inkblot test! The use that machine because of its thinner slicing capability for higher resolution images within the contrasting sequences (remember they use T2* for my case). Between the two of them, they decided to treat 2 lesions, and the 2 lesions happened to be ones we knew about and expected. They were the right frontal and left parietal lesions. As a side note, none of the lesions enhanced which is a very good thing. Either they were too small or they are something else entirely.
Here is the excerpt from the radiology report for the above mentioned MRI:
Findings: There are 10+ foci demonstrating decreased signal on susceptibility weighted imaging arrowed on series 3. A total of 2 lesions within the left parietal lobe focus demonstrating patchy enhancement (series 3 image 55) and another one in the right frontal lobe (series 3 image 45) to be treated today. A couple of indeterminate foci are circled, as are previously noted areas within the right temporal lobe. Prior treated lesions and right frontal resection cavity are unchanged as is the associated enhancement. Ventricles are age-appropriate in size and configuration.
IMPRESSION: Gamma knife planning MRI for 2 foci of decreased susceptibility effect within the right frontal and left parietal lobes.
As for my absence, it is hard to convey a fighting spirit or a vision of hope when pain is present. To compound the issue of my back/leg pain, I’ve had almost nightly migrainine-level headaches that wake me up. I had migraines when I was a younger, but after cutting out sugar and caffeine, I haven’t had one in many years. I blame it in larger part to this crazy weather after having spinal fluid drained with a lumbar puncture a day before having a gammaknife halo attached at 4 pin sites. I’m exhausted to say the least, and I use every ounce of my energy on my wife and children and rightfully so.
For those that have chronic pain, you can attest to the fact that it takes a whole lot of energy to just bring your mind to live each day. It isn’t the pain level that is an issue for me. I can withstand a lot, and I am not one to complain about being in pain. It has never been my thing to do. This isn’t to portray a “tough guy” or “macho” persona. Quite the contrary. It is my belief that the more you talk about a negative (pain in this situation), the more it becomes a focal point of conversations. It isn’t something I want to dwell on, focus on, or draw attention to. It’s life. It happens, and I want to train my mind to not focus on it so I can live how I want, when I want, and do all of this with a smile. It takes a lot. It is a constant battle between mind and body. Personally, yoga/meditation plays a very big part in trying to control what is real and how your mind/body perceives each anomaly. Let’s just say it’s a work in progress! smile emoticon Please don’t misconstrue that if it started to greatly affect my mentality and daily actions toward other people, I would seek professional help as this can be very detrimental to not only myself but for all those I surround myself with.
Personally, I am not concerned that the migraines and other pains are in any way cancer related. They don’t fit what I know, there is no logical pattern as to their happenings, and they are not continuous. However, it’d be nice to know what’s going on. We’ll find out soon!
There. Now that the not-so-fun stuff is up to date, it is a huge relief. It’s been on my mind every day, and the wonderful messages of love and worry have been amazing. Thank you!
In closing for now, one of my physicians before year’s end mentioned they hope that we have better luck in 2016 than we did in 2015 against angiosarcoma. While I know what they meant, I just gave a simple reply. We made it to 2016. What else matters? No matter the journey, isn’t that the goal? Are we not trying to just survive with any means possible? For me at least, 2015 was a very successful year as were every year previous. Life is what you make it. You try and control the things that are possible, and you rely on the collective of an amazing support group to help you through the things you cannot. When all is said and done if it is God’s will, we will live and survive to tell of our great feat that we accomplished through prayer, tears, strength, hope, fear, and determination. And we did it together. Apply that to any situation in your life as well. It’s universal no matter how unique each of our journeys are.
Thank you for being a part of this thing called life with us.
Please continue to pray for us, especially with my PET scan tomorrow and MRI the following week. Have an amazing evening. A little late, but a very happy New Year’s to all of you.
We love you so very much.